ASIF News No. 10
Founded in 1988
.The 9th ASIF Council Meeting
15–18 October 2009 in Bad Hofgastein (Austria) by Prof. Dr. Ernst Feldtkeller, Munich, Germany Twentyseven delegates from ankylosing spondylitis patient organizations in 18 countries met in October 2009 for the 9th ASIF Council meeting in the radon spa Bad Hofgastein (Austria). The meeting was hosted by Österreichische Verei-
INSIDE THIS ISSUE
The 9th ASIF Council meeting in 2009
Activities of the ASIF Executive Committee
News in the field of Spondyloarthritis
The EULAR congress in 2009 ASIF also present at World Congress of Physical and Rehabilitation Medicine in Istanbul PARE congress 2009 in Tallinn, Estonia
Infusion or injection? Patients’ preferences
Christian BOB Born – a portrait
ASAS Handbook and ASAS Slide Library
Available in the ASIF website
ASIF Executive Committee
nigung Morbus Bechterew (ÖVMB) and supported by the Gasteiner Heilstollen, a therapy center in a former mining gallery where patients with ankylosing spondylitis (AS) and other rheumatic diseases coming from many countries are treated by a natural combination of radon inhalation and hyperthermia. Gastein’s Heilstollen is the therapy center with the largest annual number of patients with ankylosing spondylitis treated world-wide. The Heilstollen company not only contributed financially to our meeting but also afforded an essential part of the logistics. The ankylosing spondylitis patient organizations in Australia, Austria, Belgium, Canada, Czechia, Denmark, France, Germany, Great Britain, Hungary, Ireland, the Netherlands, Norway, Portugal, Slovenia, Spain, Sweden and Switzerland were represented by 1–2 delegates each. ASIF was founded in 1988 to intensify the international cooperation among their presently 28 member societies who represent about 54 000 patients with ankylosing spondylitis as their individual members. The Council meeting takes place every two years, always in another country. Austria is the first country which hosted an ASIF Council meeting now for the second time.
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ASIF News No. 10
Figure 1: ÖVMB president Paul Pocek and Heilstollen director Christoph Köstinger as hosts of the 9th ASIF Council meeting in Bad Hofgastein The agenda of the meeting was prepared by members of the ASIF Executive Committee who met for this purpose in June at the occasion of the EULAR congress in Copenhagen. The participants were welcomed at the evening after their arrival by ÖVMB president Paul Pocek (Figure 1). Additional welcomes were presented by the major of Bad Hofgastein, by ASIF president Jon Erlendsson and by Christoph Köstinger, managing director of the Heilstollen enterprise (Figure 1).
Recent activities of ASIF At the beginning of the Friday morning session, ASIF president Jon Erlendsson thanked all the members of the Austrian organizing committee, especially Paul Pocek, president of the Austrian AS society, ÖVMB, for hosting this 9th ASIF Council Meeting and providing us with such a great setting. He thanked also the Gasteiner Heilstollen therapy center for both economic and logistic support. He welcomed all delegates, especially the delegate from the Swedish Rheumatism Association (Figure 2) who have
Figure 3: Press report on an awareness campaign of the Ankylosing Spondylitis Association of Ireland. October 2009
ASIF Council meeting
Figure 2: New in this family were, among others, physiotherapist Margaret Lewington from Australia and Steinar Walsö-Kanstad, member of the SRA board in Sweden. applied for ASIF membership recently. Among the 53 000 members of this association are about 3 500 patients with ankylosing spondylitis. According to the ASIF statutes the Council approved this large patient organization as a new member of ASIF. ASIF president opened the agenda by a report on the activities of the Executive Committee in the past two years (see page 7 of this ASIF News). He reported the state of the negotiations with the World Health Organisation (WHO) to celebrate a World Spondylitis Day every year at a Saturday in May. Wouldn’t it be great if the public would be made aware of our disease and connected problems on this day by broadcast and television? Jane Skerrett, director of the AS society in Great Britain, reported that ASIF is now a member of the organization „People with Arthritis/Rheumatism in Europe“ (PARE), the patient branch of EULAR (European League against Rheumatism). By this link we are now also politically represented on the level of Europe and hope that our interests can be made heard more with the help of this membership. Jane Skerrett and Cor van Drogen from the Netherlands will represent ASIF in the Standing Committee of PARE. ASIF treasurer Torben Jørgensen from Denmark presented the ASIF accounts of 2007 and 2008, and auditor René Bräm
Figure 4: Awareness campaign in France „A fond contre la spondylarthrite“. Page 2 of 19
ASIF News No. 10
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Figure 5: Awareness campaign in Switzerland by traveling with tents from town to town and offering interesting activities. from Switzerland approved his conscientious book keeping.
Gaining new members in other countries Delegates from Ireland, France, and Switzerland gave reports on interesting campaigns by which they could gain many new members for their society. In Ireland, a country-wide campaign “Get Your Back Up” was launched in the presence of a well-known sportsman (Figure 3). Television and press journalists were invited to a national photo call. Key statistics about ankylosing spondylitis and case studies were distributed. A “touch-points” booklet was distributed to general practitioners and patients, with hints to additional information in the internet. The AS society in France after their campaign „A Fond contre la Spondylarthrite“ (Figure 4) made another campaign to make the public aware of the “misunderstood invisible disease“ and made people and doctors listen to them. The Swiss AS society had made a large bicycle tour through several cantons in 2008. In connection with this, they travelled with a number of tents through four towns (Figure 5), offering a back parkour (path with training stations), a diagnostic test, lectures, discussions, and advice.
Information for emergency first-responders ASIF president Dr. Jon Erlendsson, being a rheumatologist
Figure 6: DVD of the Spondylitis Association of America for explaining the problems of ankylosing spondylitis to emergency first-responders. October 2009
and a patient with AS himself, gave a lecture on why it is so important to know about spinal fractures. He mentioned the prevalence of spinal fractures in AS patients being 14% after a long disease duration (ASIF News No. 2 of December 2004, pages 12–16). Under the headline “We are not like the others!” he pointed out that health personnel and also emergency first-responders often do not know what has to be regarded in the case of an accident of a patient with AS, and that a spinal fracture is often not visible in initial X-rays. He showed a DVD by which the Spondylitis Association of America explains the problem to emergency first-responders (Figure 6). The DVD was introduced by Laurie Savage (director of SAA) via a video presentation because she regrettably could not come to this Council meeting. She provided all delegates with copies of the DVD which represents a good example for similar activities in other countries. Jon Erlendsson also showed the Danish emergency card (Figure 7) from which an ambulance may detect how high the head of a patient has to be bedded during transportation to ensure that a fracture is not worsened by wrong bedding. I distributed an English version of an emergency leaflet designed by anesthetists for the German AS society (Figure 8). With this leaflet, patients with AS can make first-responders and anesthetists aware of their special needs in bedding and narcosis.
Figure 7: Emergency card of the Danish AS society in credit card format with a photograph of the patient showing which form the spine had before the accident and how high exactly the head has to be bedded for transportation. Page 3 of 19
ASIF News No. 10
ASIF Council meeting
Figure 8: English version of an emergency leaflet used by members of the German AS society to make first-responders and anaesthesists aware of the special problems with ankylosing spondylitis.
Patient education Dr. Gudrun Lind-Albrecht, 2004 – 2007 medical director of Gastein’s Heilstollen, since 2008 member of the editorial team for the membership journal Morbus-Bechterew-Journal of the German AS society, contributed with an interesting lecture on the multimodal (based on many methods) therapy of ankylosing spondylitis. She focused her lecture on patient education where she has extended experience and in which also all the treatment modalities are explained. Since October 2009 she is speaker of the working group patient education within the German Rheumatology Association, responsible for the continuous improvement of all the patient education programs for rheumatic diseases. Dr. Gudrun Lind-Albrecht explained in her lecture not only the contents of the education program for patients with ankylosing spondylitis but also the psychological background of
Figure 9: Paul Pocek on a locomotive of the small yellow train which brings the patients 2 km deep into the Radhaus berg rocks to the therapy stations. October 2009
patient education. Of course she gave also an extended introduction into the radon therapy and its efficacy (ASIF News No. 8 of October 2008, pages 2–5), and mentioned also the Neurocognitive therapy (ASIF News No. 3 of February 2006, pages 10–12) which is in young patients who are willing to take the effort, more effective than any other therapy of ankylosing spondylitis.
Visit to Gastein’s radon gallery Immediately after this lecture the participants were invited to visit the Gasteiner Heilstollen and to see and feel how ankylosing spondylitis is treated in this effective therapy station. After measurement of the blood pressure and an introductory talk by one of the Heilstollen physicians, the participants could board the small yellow railway train (Figure 9) which brings the patients 2 km deep into the mountain to the therapy stations (Figure 10) with their elevated temperature,
Figure 10: Entering the therapy station deep inside the rocks of the “Hohe Tauern” mountains Page 4 of 19
ASIF News No. 10
Figure 11: Jon Erlendsson, ASIF president 2005 – 2009 (at left), and Seoirse Smith, ASIF president 2002 – 2005 and again elected at this council meeting in 2009 high humidity and elevated radon concentration. Resting on simple wooden beds in this unusual atmosphere, every conversation ended automatically and one could concentrate to one’s own feeling of the warm silent environment and the view to the slightly illuminated rocks. The gallery was created in the 1930s as a late trial to mine gold in the Radhausberg where gold mining was so successful further up in former centuries. There was found no gold, but astonishingly miners with rheumatic diseases lost their complaints. Researchers from the University of Innsbruck investigated the reason and found the elevated temperature and radon concentration where thereafter the treatment station was opened in 1953. When we arrived again outside of the gallery at 1200 m see level, snow was falling. The evening in the rural old house of „Schmaranz-Bräu“ gave us again good occasions for internationally exchanging experiences and opinions.
Figure 13: The new Executive Committee of ASIF (from left to right): Hedley HAMILTON (Great Britain, ASIF vice president), Seoirse SMITH (Ireland, president), Torben JØRGENSEN (Denmark, treasurer), Jane SKERRETT (Great Britain), Cor VAN DROGEN (Netherlands), Ken MULHOLLAND (Canada, secretary). Dr. Tuncay DURUÖZ from Turkey could not come because of other obligations. October 2009
ASIF Council meeting
Figure 12: Hedley Hamilton, chairman of the British AS society, presented the results of one of the workshops on future activities of ASIF.
Workshops on future activities of ASIF Saturday morning began with a report by Ruth Kurz on the treatment of ankylosing spondylitis in Austria. A major part of the treatment program consists of home exercise along with participation in one of the 50 physiotherapy groups. Doctors also recommend a 3 to 4 week treatment at a health resort such as the Gasteiner Heilstollen which in some cases is paid by compulsory or private health insurance. In three workshops on future ASIF activities, the following subjects were discussed: • Collaboration with PARE and the possibility of national AS societies to submit a “shopping list” to our members in the Standing Committee of PARE, • How to make use of a World Spondylitis Day, • Distribution of information on the management of patients with AS in an emergency case, • Influencing hotels and restaurants to provide and announce equipments suitable for patients with AS (pillows, walk-in showers etc.), • Exploring possibilities to improve ASIF funding that would allow upgrading of our methods of communication,
Figure 14: Retired ASIF president Jon Erlendsson and retired vice president Ernst Feldtkeller after the election of their followers. Page 5 of 19
ASIF News No. 10
ASIF Council meeting
Figure 15: Torben Jørgensen expressed on behalf of all of us our thanks to Jon Erlendsson for his good work during his time as ASIF president. • Under-researched areas of importance for patients with AS and the possibility to submit proposals to our members in the Assessment of SpondyloArthritis international Society (ASAS). After the presentation of the results discussed in the workshops (Figure 12), elections of the members of the Executive Committee were part of the agenda.
teiner Heilstollen for the good organisation of the framing program of this Council meeting.
Newly elected Executive Committee
Excursion to Salzburg
Jon Erlendsson had to spend for several weeks two years ago in artificial coma because of a lung infection and was therefore glad that Seoirse Smith from Ireland (Figure 11) offered to follow him as ASIF president. I was this year forced to stay in bed for several weeks because of a spinal fracture and argued that it is certainly not optimal if ASIF will have within two years an 80 years old vice president. My role as ASIF webmaster was already taken over by Reto Baliarda, an employee of the Swiss AS society. During the elections, Hedley Hamilton, chairman of the AS society in Great Britain (Figure 12), declared his readiness to take over the role of being ASIF vice president. Thus I was able to withdraw my candidature and make the place free for him. ASIF treasurer Torben Jørgensen from Denmark and ASIF secretary Ken Mulholland from Canada were reelected in their present functions. Among the three additional members of the Executive Committee, Cor van Drogen from the Netherlands and Jane Skerrett from Great Britain were reelected in their positions (Figure 13), and Dr. Tuncay Duruöz, rheumatologist and president of the AS society in Turkey (not present in Bad Hofgastein), was elected as a new member of the Executive Committee. At the end of the session, Torben Jørgensen expressed in the name of all of us our thanks to Jon Erlendsson for his tremendous work during his time as ASIF president (Figure 15). Jon Erlendsson thanked in his final words under great applause Paul Pocek, Ruth Kurz and the whole organizing committee of Österreichische Vereinigung Morbus Bechterew for their good work (Figure 16). He thanked also Christoph Köstinger, Eva Lenz and Johann Karner from the Gas-
The meeting closed with an afternoon and evening excursion to Salzburg (Figure 17), capital of the county Salzburger Land where the Gastein vally belongs to. There we could admire the churches, squares and the Festung Hohensalzburg and listen to music composed by Salzburg’s most famous son Mozart in a town which became rich also by the former gold mining in the Gastein valley. ◄
Figure 16: Jon Erlendsson during his closing remarks at the end of the 9th ASIF Council meeting in Bad Hofgastein.
Title photography: Participants of the ASIF Coulcil meeting in front of the Leopoldsknoner Weiher near the city of Salzburg Photographers of the pictures taken at the meeting and shown in this article: Pavel Kosek, Ernst Feldtkeller, Inge Enzendorfer, Ken Mulholland, Gudrun Lind-Albrecht. Journal editors: Please inform us if you need some of the photographs in JPG format.
Figure 17: Evening view from the access to the fortress Hohensalzburg to the center of Salzburg with the cathedral (at right) and the gothic Franziskanerkirche (center). Page 6 of 19
ASIF News No. 10
ASIF activities in 2007–2009
Activities of the ASIF Executive Committee in 2007–2009 Summary of the opening remarks by the outgoing president, Dr. Jon Erlendsson, Denmark, at the 9th ASIF Council Meeting held in Bad Hofgastein, Austria Quite a number of activities have been taken on by the ASIF Executive Committee since the 8th Council Meeting in 2007.
World Spondylitis Day In Jachymov Dr. Pedro Nobre of the Portuguese AS society, in conjunction with the Spanish AS society, presented an update of a proposal for a World Spondylitis Day, to be approved by the World Health Organization (WHO). The proposal stated in part that, “all countries combine efforts to sensitize governments, health professionals and the population about the problems affecting persons with AS”. It was agreed by all delegates in Jachymov that the Executive Committee should try to find a date and look further into the topic. We have proposed that World Spondylitis Day be held annually on the first Saturday after May 1st. I have written to the WHO office in Geneva asking for approval. I have been informed that the establishment of World Days is a long process. What do we do now? a) The simple model: We go ahead before WHO answers us. Every AS society would then try to arrange some kind of activity on the first Saturday after May 1st and to advertise that this day is the WSD. Jane Skerrett (NASS) already has plans for that in the UK from next year. b) We might try to establish a steering group to coordinate things. This will require financial and administrative support. I have had a couple of telephone discussions about WSD with Abbott International, Public Affairs, in Chicago. Abbott expressed some interest in sponsoring, but before deciding they would like to meet the new ASIF president for further discussions.
Dr. Jon Erlendsson giving his report to the ASIF Council. position in the French AS society AFS, and regrettably in consequence also the Executive Committee of ASIF. In her place we were happy to appoint Cor van Drogen from the Netherlands. Ernst Feldtkeller had an accident this summer, but missed only the EULAR Congress in June. Coby Otter has missed meetings due to illness and I was hospitalized for four months shortly after Jachymov. I recovered to my present state in a year’s time, and as a consequence I have decided to step down from the Executive Committee at the end of this
Finance and Sponsorship At the last council meeting it was proposed that ASIF should seek to improve its financial position by sponsorships. In 2008 we obtained a sponsorship from Wyeth, Denmark, of 2,000 EUR for a meeting of the Executive Committee at the International Congress of Spondyloarthropathies in Gent. In 2009 we received 5,500 EUR from Abbott that partly covered the cost for a meeting of the Executive Committee and the participation in the EULAR Congress in Copenhagen.
The Executive Committee Although the Executive Committee looks happy enough in this picture, we haven’t been spared from illness among the members. Due to illness, Martine Roch did not attend the meeting in Jachymov and she had subsequently to leave her October 2009
Members of the 2007–2009 ASIF Executive Committee (from left to right): Ken Mulholland, Torben Jørgensen, Jane Skerrett, Coby Otter, Jon Erlendsson, Ernst Feldtkeller. (Martine Roch could not attend the meeting). Page 7 of 19
ASIF News No. 10 meeting. I wish to thank the committee members for their great work despite the difficulties. There have been three meetings of the Committee since the last Council Meeting. The intention is that the committee meets twice a year provided that we can find sponsors. The goals for ASIF are: 1. Exchange of information between members; 2. Commitment to scientific activities ensuring that the patient voice is heard where this is possible; 3. Encourage the formation of patient-led organisations; 4. Co-operate with other patient organisations, 5. Patients educating doctors and other health personnel about AS and its management; 6. Raise awareness of the condition in the widest arena possible.
1. Exchange of information Ken Mulholland is the diligent editor of ASIF News, and Ernst Feldtkeller the main contributor. Thanks are due to both of them. Luckily also many others contribute, but we would still like to bring more news from all societies about their activities and plans.
World-wide overview of AS societies: On the ASIF website you find a world map indicating all the countries where AS societies exist and which of them are ASIF members. The website and the country reports were administered by our vice-president Ernst Feldtkeller, and the website is a most valuable instrument. Ernst Feldtkeller served as webmaster right from the start. He now wants to be relieved. The editor of the Swiss AS magazine, Reto Baliarda, has kindly offered to take over this important position. Nobody can do without a good website. Several practical forms (BASDAI, BASFI etc.) for the assessment of AS in different languages are placed on our website. Ernst Feldtkeller encourages you to submit the forms in your language if you are not yet represented. Thanks are due to Jane Skerrett who has written the revised ASIF leaflet. Copies can be ordered from the NASS office. The booklet Ankylosing Spondylitis: Assessment Scores, Classification and Diagnosis is published in cooperation between ASIF and the Spondyloarthritis Research Consortium of Canada (SPARCC),. The main author is Ernst Feldtkeller. You can order copies from the NASS office and from the SPARCC website. (see ASIF News No. 8). Exchange of the national AS-magazines: We recommend the exchange of AS magazines as it serves as an inspi-
ASIF activities in 2007–2009 ration and is one of the goals of ASIF.
2. Scientific activities The questionnaire study: Has drug treatment of AS any adverse effects on the offspring were set up by prof. Monika Østensen with the assistance of prof. Ernst Feldtkeller. The collection of questionnaires was closed by the end of 2008. The participation was somewhat discouraging, nevertheless Monika Østensen received questionnaires from 189 patients, 79 men and 110 women: 70 from Germany 39 Ireland 38 Switzerland 26 Denmark 10 Norway 7 from other countries Further work with the project has unfortunately been delayed due to the illness of Monika Østensen’s husband. Thanks are due to all participating patients and AS societies. The proposal to use the term “disease duration” only for the duration since the first symptoms of AS, and never for the duration since diagnosis, has been published in the journal Rheumatology International. (Feldtkeller E, Erlendsson J: Definition of disease duration in ankylosing spondylitis. Rheumatol Int 2008;28:693–696. See also ASIF News No. 5). Members of the Executive Committee have attended the International Congress on Spondyloarthropathies in Gent in 2008 (see pages 10–11 in these ASIF News) and the EULAR Congress in Copenhagen this year (see pages 12– 14 in these ASIF News). On all occasions we hoist the ASIF flag and meet and discuss with both patients and scientists. Also at the World Congress of Physical and Rehabilitation Medicine in Istanbul (see page 14 in these ASIF News) the ASIF poster was exhibited and ASIF leaflets were distributed. We have the good fortune that our vice-president, prof. Feldtkeller, is an ordinary member of ASAS, the Assessment of SpondyloArthritis international Society. Every year there is an ASAS workshop, and shorter meetings in connection with every EULAR and ACR congress. I wholly agree with Ken Mulholland when he states that it is most important for ASIF to be known as a serious and contributing partner for ASAS. Ernst Feldtkeller regularly contributes with a summary of the workshops in ASIF News (see ASIF News No 5, No. 7, and No. 9). I am happy that Ken Mulholland and Ernst Feldtkeller also keep an excellent working relationship with Spondyloarthritis Research Consortium of Canada, SPARCC. In a cooperation between ASAS, PARE and ASIF a patient version of the ASAS/EULAR recommendations for the Management of ankylosing spondylitis was agreed upon in February 2008 (see ASIF News No. 7). The result has been published in German and English (Kiltz U, van der Heijde D, Mielants H, Feldtkeller E, Braun J on behalf of the PARE/ EULAR patient initiative group: ASAS/EULAR recommendations for the management of ankylosing spondylitis – the patient version. Ann Rheum Dis 2009;68:1381–1386.
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ASIF News No. 10 It might be a good idea to translate the recommendation into your language. Under the umbrella of ASAS and in cooperation with ASIF, representatives from ASAS and 12 experienced AS patients from 7 countries gathered in August 2008 in Düsseldorf, Germany, to develop a questionnaire on “the impact of ankylosing spondylitis on the quality of life” (see ASIF News No. 8). Before the questionnaire will be published, it will be evaluated further and hopefully approved by WHO. Ernst Feldtkeller, Ken Mulholland and Cor van Drogen from the Executive Committee participated, as well as our newly elected vice president, Hedley Hamilton.
3. Formation of patient-led AS societies and new members of ASIF. We have had contacts with an AS patient in India, a doctor from the Arab Emirates and a patient from Lithuania. Since then we have not heard of any further development. However, on the positive side, the Swedish Rheumatism Association has applied for ASIF membership (see page 2).
4. Co-operation with other patient organisations ASIF was accepted as co-opted member of the Standing Committee of PARE at a meeting in June at the EULAR Congress in Copenhagen. PARE, People with Arthritis and Rheumatism in Europe, is the patient arm of EULAR. The membership will be evaluated by PARE after two years and may be prolonged if our cooperation proves fruitful. The co-opted membership was a result of several contacts since 2006. In 2007 I was invited to speak about ASIF at a PARE meeting at the EULAR Congress in Barcelona, and Jane Skerrett attended the PARE Autumn meeting in Budapest in 2008. PARE is working on a new strategic plan. Among several topics are: Continue and expand building a platform to engage with European policy-makers. Thus, this should provide a platform for ASIF which has otherwise been difficult to ob-
Cor van Drogen with Birte Gluesing, PARE Project Manager at EULAR Congress, Copenhagen).
ASIF activities in 2007–2009 tain. Jane Skerrett will expand on the subject of PARE. Cor van Drogen will represent ASIF at the PARE Autumn Meeting in Tallinn in November. (see report on pages 15–16 of these ASIF News) In May this year an Immune Modulated Inflammatory Disease (IMID) Summit took place in Copenhagen. Patients from 12 countries representing societies within psoriasis, ulcerative colitis, Crohn’s disease and AS gathered to exchange ideas. From ASIF, Jane Skerrett, Seoirse Smith, Torben Jørgensen and I attended. A committee is now working on establishing an IMID website, starting with a Danish version. The summit was sponsored by Abbott. The next IMID summit will take place in Belgium next year.
5. Patients educating doctors and other health personnel. The Spondylitis Association of America, (SAA), has developed and produced a DVD with the title: “Ankylosing Spondylitis: Managing Patients in an Emergency Setting. A primer for First-Responders”. This is an excellent example of how we – as patients – can help inform and educate health personnel on important aspects of our disease. I have discussed with Laurie Savage, Managing Director of SAA, how members of ASIF might benefit from the DVD. Another example of how to inform health personnel on necessary precautions when dealing with AS patients is the German information leaflet prepared by Ernst Feldtkeller, and different kinds of personal info cards, like the Danish red card (see pages 3 and 4 of this ASIF News).
6. Raise awareness on the widest arena The World Spondylitis Day is a good example of raising awareness. Another good example is a new topic that we have only touched briefly upon in the Executive Committee. It is called the Hotel Comfort project. Abbott has expressed some interest in the project. The problem for AS patients regarding hotel comfort is normally to find a mattress of medium firmness and to have a pillow that can be adjusted exactly to the height between your head and the mattress when lying on your side or on your back. It is very important if your neck is stiff. The pillows in hotels are often too big and unhandy. Some AS people might carry their own pillow, but that is impractical. In short, the idea of the project is twofold: • To increase the hotel comfort for AS patients, and to raise the awareness of this concern in the hotel industry. The idea is to provide a website showing the hotels that provide comfort for AS patients’ needs; • To serve as an additional platform to inform about AS in general on the same website. The Danish AS society and Abbott are presently investigating the topic for a proof of concept. As the outgoing president, I would now like to thank all the members of the Executive Committee for their great contributions to the work of ASIF during my term and I wish the new Executive Committee much success through the next term. ◄
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ASIF News No. 10
Spondyloarthritis congress 2008
News in the field of Spondyloarthritides Report on the 6th International Congress of Spondyloarthropathies 2008 in Gent by Dr. med. Uta Kiltz, Herne, Dr. med. Martin Rudwaleit, Berlin, Prof. Dr. med. Joachim Sieper, Berlin, and Prof. Dr. med. Jürgen Braun, Herne, all in Germany In ASIF News we report regularly on the results of the International Spondyloarthritis Congress taking place biannually in Gent (Belgium), see ASIF News No. 2 (December 2004) and No. 5 (March 2007). The 6th International Congress of Spondyloarthropathies (2 – 4 October 2008) was chaired by Prof. Dr. Jürgen BRAUN from Herne (Germany) and Prof. Dr. Matthew BROWN from Woolloongabba (Queensland, Australia). Again the newest developments in the field of spondyloarthritides and especially of ankylosing spondylitis were presented.
Genetics With HLA-B27 an important predisposition factor for ankylosing spondylitis is now known since 30 years. This factor Figure 1: Hypothesis for the interaction of inflammation and new bone formation explains, however, only 20–30% of the in ankylosing spondylitis according to Sieper, Appel, Braun and Rudwaleit 2008 inheritable predisposition. Matthew BROWN now presented two additional genes which contribute Clinical manifestations of to this predisposition: ARTS1 and IL23R. ARTS1 is a proankylosing spondylitis tein which takes care for the optimal length of peptides (proThe assessment of functional limitations caused by ankytein fragments) of MHC class I molecules (of the immune losing spondylitis was an essential subject of this congress. system) and induces a separation of receptors (receivers of The term function nowadays implies not only physical abilichemical signals) of proinflammatory cytokines (signalties but also for instance the possibility to take part in social carrying molecules) from the cell surface. IL23R encodes a life. This view is part of the International Classification of cytokine receptor on the surface of Th17 helper cells. How Functioning, Disability and Health (ICF) of the World these genes contribute to ankylosing spondylitis, is unknown. Health Organisation (WHO). An “ICF Core Set for AS” preHypotheses assume both a misdirected activation of HLA sented by Annelies BOONEN from Maastricht (Netherlands) peptides and an effect in connection with cytokine signals. is based on this general definition. Disease mechanisms Désirée VAN DER HEIJDE (Leiden, Netherlands) presented a new method to assess the disease activity in ankylosing In contrast to rheumatoid arthritis, new bone formation is spondylitis. In contrast to the Bath Ankylosing Spondylitis prominent in ankylosing spondylitis, the interconnections Disease Activity Index (BASDAI), the Ankylosing Spondylibeing unresolved. Joachim SIEPER from Berlin presented a tis Disease Activity Score (ASDAS) developed in the frame hypothesis which assumes that new bone formation can only of the Assessment of SpondyloArthritis International Society start in an interval without inflammation (Figure 1). (ASAS) contains, besides the judgement by the patient, also Rik LORIES et al. from Leuven (Belgium) however assume, acute phase reactants (erythrocyte sedimentation rate or Cbased on results of mouse experiments, that bone erosion (by reactive protein) and thus helps more reliably to distinguish inflammation processes) are not necessary for new bone forbetween high and low disease activity. mation. This question is of interest because only if bone formation and inflammation are coupled, one can hope to preDiagnostics vent also the new bone formation by means of anti-inThe diagnosis and classification criteria for ankylosing flammatory substances like TNF-alpha blockers. spondylitis used so far depend on the proof of X-ray changes Page 10 of 19
ASIF News No. 10 in the sacroiliac joints and do not respect, on the other hand, magnet resonance imaging as sensitive method to detect inflammation. Martin RUDWALEIT from Berlin (Germany) presented new criteria for axial spondyloarthritis which were likewise developed in the frame of ASAS. Conventional X-rays are evaluated most reliably with the modified Stokes Ankylosing Spondylitis Spinal Score (mSASSS). In this assessment instrument, the lower part of the thoracic spine is, however, not regarded because of its limited visibility in lateral X-rays. Xenofon BARALIAKOS from Herne (Germany) presented a new assessment method called Radiographic Ankylosing Spondylitis Spinal Score (RASSS) which includes the lower part of the thoracic spine and thereby regards, on average, 30% more new syndesmophytes than regarded with the mSASSS.
Anti-TNF-alpha therapy Martin RUDWALEIT from Berlin presented predictive factors for a good response to a therapy with TNF-alpha inhibitors. These predictive factors include the extent of inflammation signs visible in magnet resonance images. Likewise Martin RUDWALEIT demonstrated that in an evaluation of magnet resonance images also the back-side parts of the spine should be regarded (Figure 2). Johan ASKLING et al. from Stockholm (Sweden) showed data of a Swedish biologics register (ARTIS) containing adverse side effects of TNF-alpha inhibitors. According to these data the risk of an infection needing hospitalized treatment decreases after one year of anti-TNF therapy. Likewise according to J. ASKLING et al. the existing information on the incidence of solid tumors in connection with anti-TNF therapy (growth of an existing tumor or induction of a new tumor) is still unclear. Observations of patients with
Spondyloarthritis congress 2008 rheumatoid arthritis and with a malign lymphoma indicate that more the disease activity and not the anti-TNF therapy plays a role in the induction of a malign lymphoma. Joachim SIEPER from Berlin presented new therapeutic approaches for the treatment of ankylosing spondylitis. Abatacept, Rituximab and medications against the cytokines IL-6R, IL-17, IL-23 and regulatory T-cells are being tested in patients not treated with TNF-alpha inhibitors as well as in patients who did not respond sufficiently to TNF-alpha inhibitors.
Conclusions We expect that new findings in genetics and immunology will bring light into the pathogenesis (disease origin) and pathophysiology (disease mechanisms) of the spondyloarthritides and thus lead to new concepts. Already now a longstanding suppression of the disease activity and an improvement of the mobility is possible in patients with ankylosing spondylitis with the help of TNF-alpha inhibitors. Nevertheless, a large number of open questions is still to be answered which were extensively discussed at the 6th Spondyloarthritis Congress in Gent. ◄ Address of the author mentioned first:
Rheumazentrum Ruhrgebiet St. Josefs-Krankenhaus Landgrafenstr. 15, 44652 Herne
Shortened patient-adapted translation by Ernst Feldtkeller of a scietific article published in Zeitschrift für Rheumatologie volume 68 (2009) pages 420–422
Figure 2: Typical inflammatory signs in magnet resonance images of the middle thoracic spine with involvement of a costovertebral joint and the posterior (back-side) part of a vertebral body, according to RUDWALEIT Page 11 of 19
ASIF News No. 10
EULAR Congress 2009
Report by Cor van Drogen and Ken Mulholland, ASIF Executive Committee Over 13,000 visitors from all over the world came to Copenhagen in June to attend the 10th Annual EULAR (European League Against Rheumatism) Congress. Much has changed in Rheumatology over the past decade and this annual forum is the perfect chance to get up to date on the latest scientific and clinical information as well as to mingle with patients, physicians, surgeons, scientists, and other health and industry professionals said EULAR President, Ferdinand Breedveld at the opening ceremonies. The organization, People with Arthritis/Rheumatism in Europe (PARE) is a sub-organization of EULAR. It was well-represented at the Congress with its own sessions, display stands and poster gallery.
Entrance to EULAR Bella Centre Congress Hall
World Arthritis Day Arthritis Day is the focus of the PARE Program at this year's Congress, according to Ms. Sandra Canadelo, chair of the EULAR Standing Committee on PARE. In particular, PARE has developed a survey about work and rheumatic diseases. In preparing the survey, the group has created three questionnaires: one for people with rheumatic diseases, one for health professionals and allied health personnel, and one for employers. "The program will be concentrating on the economic impact of work and the real value of voluntary work," as well as the impact of rheumatic diseases on relationships and family life. PARE continues to emphasize the importance of effective communication between patient and
Cor van Drogen, ASIF executive member visits PARE booth. Page 12 of 19
ASIF News No. 10
Dr. Berit Schiottz-Christensen (Denmark) and Dr. Robert Inman (Canada). health professionals. Incoming PARE chair Marios Kouloumas highlighted the importance of doctors educating patients with rheumatic diseases so they can become research partners and advocates. Ms. Canadelo noted that the number of organizations for people with rheumatic diseases that participate in the organization has grown, and the PARE network has become stronger. More organizations are now participating in PARE activities such as World Arthritis Day, which is celebrated each year with a theme chosen by PARE. This year's theme is "Let's work together." ASIF is now pleased to be accepted as a co-opted member with Cor van Drogen and Jane Skerrett as our representatives on PARE.
Scientific Sessions and Posters The scientific program sessions that took place each day in a multitude of meeting rooms, kept everyone having to plan carefully the sessions to attend. On the subject of Ankylosing Spondylitis alone there were 222 sessions and on Psoriatic Arthritis there were 150 sessions. Dr.’s Schiottz-Christensen and Inman (above) jointly chaired a session on state of the art and best practices in Spondyloarthritis covering diagnosis, monitoring and prescribing best treatment practices. Patients that attended the scientific and clinical sessions would need a good knowledge of the medical terms in order to be able to understand the important research that is being presented. ASIF is fortunate to have Prof. Ernst Feldtkeller who is both an AS researcher and AS patient and is able to attend these sessions and translate them to a patient friendly version for the readers of ASIF News (see ASIF News No. 1, No. 4, No. 6). Unfortunately Ernst was recovering from a nasty fall and was unable to attend this congress. Patients however can attend the PARE sessions for patients which take place at the same time as the scientific and clinical sessions.
EULAR Congress 2009 tient has another, more practical perspective. “While riding a bicycle, I cannot see cars coming when I want to make a lefthand turn.” A good example of how patients have influenced rheumatism research was given by Professor Da Silva from Portugal. Scientists and rheumatologists constructed a survey with 74 questions for measuring the impact of rheumatism on daily life. In their opinion, these questions produced a good picture, but they decided to ask the patients their views anyway. To their surprise, patients added 66 more questions that they felt were meaningful. The most remarkable difference between the two sets of questions was in the type of questions asked by the doctors versus those asked by the patients. The doctors asked questions, such as, “Do you have a lot of pain?” “Do you suffer morning stiffness?” “Do you have restrictions in your movement?” Patients, however, would ask “Do you need help getting dressed?” “Can you take part in social activities?” “Are you able to manage the sickness or do you feel that your sickness controls you?” Compared to how doctors see things, the patient’s questions represent a revolutionary way of thinking. In some European countries rheumatism is considered to be a geriatric disease and the normal medication is simply, a pain killer. From research on a randomly selected sample of children 13 years of age, x-rays show that 43% of them had visible abnormalities of the spine. However, none of those with abnormalities had made any complaints and they had felt that they were healthy. This shows that being sick or abnormal is not determined by a scientific approach only. What the patient experiences and understands is also of great importance. The role of the patient in perceiving and dealing with illness cannot be over emphasized. Everyday at a specific time the scientific sessions were halted as this was the time for viewing the scientific posters and Allied Health Professionals posters were available for viewing. The poster sessions, offering lively interaction between presenters and participants, are regarded by many as the heart of the congress. On the category of Spondyloarthritis (SpA) there were 89 posters and abstracts covering treatments and clinical aspects other than treatments.
Patients are taken more seriously In several presentations it was clear that the role of the patient is now being more taken into consideration by doctors and scientists and that the way of looking at problems has changed. For example, the doctor will say, “The head can turn so many degrees to the left or to the right.” But the pa-
Ken Mulholland ASIF secretary and Torben Jørgensen ASIF treasurer in front of ASIF poster. Page 13 of 19
ASIF News No. 10
EULAR Congress 2009 famous Tivoli Gardens (shown in header), magnificent Museums, and the Royal Theatre which is world famous for its Royal Ballet, Palaces and many historical buildings. Of course your tour would not be complete without a visit to view the “Little Mermaid”. The statue of The Little Mermaid (Den lille havfrue in Danish), sits on a rock in the Copenhagen harbour at Langelinie. This small and unimposing statue is a Copenhagen icon and a major tourist attraction.
EULAR outgoing vice president for PARE Maarten de Wit (left) and Cor van Drogen, ASIF Executive Committee.
Patient Research Partners EULAR is now developing a project to explore the best ways to recruit, educate and establish a network of competent patient research partners. There is a need to create the appropriate conditions and guidelines for their effective involvement in EULAR or other international scientific research projects. Maarten de Wit, outgoing vice president of EULAR for PARE, said: ‘We hope that we can provide practical and where possible, evidence-based recommendations for involving people with arthritis in new EULAR projects.
Excursions: Let Copenhagen Charm You EULAR attendees and their guests were offered a number of half-day and full-day tours. In Copenhagen you can view the
ASIF also present at the World congress of Physical and Rehabilitation Medicine in Istanbul
Dr. Tuncay Duruöz, new member of the ASIF Executive Committee, organized the World congress of Physical and Rehabilitation Medicine in Istanbul.
ASIF leaflets were distributed in front of the ASIF poster. Page 14 of 19
ASIF News No. 10
PARE Congress 2009
PARE Autumn Conference in November 2009 by Cor van Drogen, member of the ASIF Executive Committee, PARE member, the Netherlands EULAR, the EUropean League Against Rheumatism, contains a patient organisation called PARE, People with Arthritis in Europe. ASIF was present as a co-opted member at the PARE congress at Tallinn, Estonia. ASIF is pleased to be able to participate in this great organisation, EULAR. It gives us a good opportunity to spread our ideas and build up a net work and learn from them. In November 6th to 8th 2009 about 120 members of rheumatism patient organisations of many European countries gathered in Tallinn. Their goal was to meet and share ideas so as to spread them in their own country. For the first time ASIF was invited to sent a representative to this annual autumn congress. The theme of the congress this year was:
– for a better future”.
Workshops European Minimum Standards (EMS) of work for people with rheumatic diseases was presented by Dr. Su Wang from the UK. The outcome of a recently study of three years in the UK with over 1300 participants teaches that employers have a profit of three times the investment. After her presentation we continued on this subject during several workshops on the following subjects: • Operate within and enforce existing legislation. • Increase opportunities and choices such as working flexible hours, working from home and changing jobs within the same place of employment. • Ensure workplaces are accessible to all, including those with disabilities • Provide a reasonable level of adaptations to ensure that equipment and technology can be used by those with disabilities • Provide a supportive environment that one feel safe to enclose their condition to their employer, manager and/or coworkers without prejudice • Provide access to adequately professional for advice and support.
Access to Work
It was related to the theme of World Arthritis Day on October 12th. At this congress lectures and workshops were given, a poster exhibition was set up, a share fair was held and also the social aspect was paid attention to. Giving a good lecture turned out to be an art. Some really attractive presentations with the help of inspirational pictures were given by actors who gave their lecture in a humorous way of speaking. The focus of this congress was “How to keep working or to get work”. Also for people with rheumatic diseases, work is important to feel productive, to be a part of society and for financial support.
A 2009 online survey among 3600 people in 78 countries showed that access to work remains a problem for many people with rheumatic diseases. Employers need education to better understand rheumatic diseases. More support from governments is wanted. There are European health and safety legislation and also anti-discrimination legislation. Here it says it is expected from employers to make reasonable possibilities to work for people with disabilities. But what is reasonable for an emp-
Workshop Page 15 of 19
ASIF News No. 10
PARE Congress 2009
loyer and what for an employee? Disabled people searching for work ought to be realistic about the expectations according to their potential and capacity. Peter Oesch from Switzerland shared his experience with adapting workplaces. An evaluation of one’s working station by a professional is often required. Working stations must be tailored to the individual’s needs. Do not wait too long before asking advice. Who pays for a workplace (risk) assessment, the employer, the employee, the (private or social) insurance, or the state? In every country it can be different. When an employer knows about the benefits such an assessment can give his company, he shall easier make use of it.
Patients point of view John McGregor, from Arthritis Care, UK addressed us showing the patient point of view. Is the patient ready for a “Preparing 4 work” program? Does he know enough about himself? How does he act and react? What does he really want? He has to discover his own skills for working. Mostly he does not realize some potential he does by routine. On the other hand do not overestimate your possibilities, be realistic. Is one ready to change? Is this the perfect time for a switch in
your career? People do not like to show that they have a rheumatic disease. What and when is it wise to tell your boss, your manager, your colleagues, your direct co-worker? At the share fair, like at a market, an opportunity was offered to discuss with delegates from several countries to learn and to seek for assistance for projects or training programs, Exchanging projects are stimulated and sponsored by PARE. At the Poster Exhibition several countries showed their activities which were held in the last year. Some organized sport activities, some held their first rheumatic congress and another one had their first activity where politicians participated.
Sightseeing It was good to be at a well organized and informative congress. It was also good to be in Estonia, a country with nice, friendly and helpful people, especially when the younger people speak English very well. Visiting the old centre of the capital city Tallinn where the atmosphere of hundreds years ago was preserved was a must.
Tallinn City Centre
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ASIF News No. 10
Infusion or injektion? Patients’ preferences for tumor necrosis factor inhibitors by Dessy W. Fajri, Caroline A. Brand, Shyamal i C. Dharmage, Belinda J. Martin, Russell R. C. Buchanan and Lionel Schachna, Victoria, Australia Tumor necrosis factor inhibitor (antiTNF) therapy has set a new standard for an acceptable treatment outcome of patients with severe ankylosing spondylitis (AS). There seems to be almost no difference for axial disease in the efficacy of infliximab (trade name remicade) administered by intravenous infusion and etanercept (enbrel) or adalimumab (humira) administered by injection which can be done by the patient himself. Head-to-head trials have, however, not been performed. In many countries, insurance reimbursement policies of the health insurance companies strongly influence prescribing patterns of TNF inhibitors. In other countries, universal access to these medicines for citizens with severe AS is the rule, with no differential reimbursement for infusions or injections. Thus the patients themselves may be involved in the decision.
Patient survey for preferences and their motives For finding out which factors influence patients’ preferences of intravenous versus subcutaneous TNF blockers, an unstructured phone survey was first conducted among 20 randomly selected AS patients treated with either intravenous or subcutaneous TNF blockers. The patients were asked to
provide three reasons for their choice. The responses were then used to create a self-administered questionnaire in which the patients were asked to rate their response to each of 19 possible reasons for choosing intravenous or subcutaneous TNF blockers using a five-point scale reaching from strong agreement to strong disagreement. The statements were presented in the questionnaire in no specific order. Patients who had received more than one TNF blocker were asked to consider only the reasons for choosing their first TNF blocker. All AS patients receiving TNF blocker therapy at the Austin Spondylitis Clinic, the only AS referral centre in the Australian state of Victoria, were invited to participate. Excluded were patients with inflammatory bowel disease (because infliximab was generally the TNF blocker of choice among this subset) and patients treated before 1 April 2005 (when infliximab was the only available TNF blocker and there was no choice between more than one).
Results The response rate was 74 out of 93 patients (80%). The first prescribed TNF blocker was infliximab in 39%, etanercept in 43% and adalimumab (introduced as the latest of all three) in
18% of the patients responding. 66% stated that they were very satisfied with their AS treatment, 30% were satisfied and 4% neither satisfied nor dissatisfied. Responses to this question were similar for patients choosing intravenous or subcutaneous therapy. 80% agreed with the statement “My doctor gave me a choice and I made a decision based on my personal preference”. 11% agreed with “My doctor gave me a choice and I let him/her decide for me”, and 9% agreed with “I didn’t know that there were any choices; my doctor made the choice for me”. The results of the survey were unchanged when the latter two groups were excluded from the analysis. Patients administered intravenous or subcutaneous therapy as their first TNF inhibitor did not significantly differ by demographic covariates or the disease severity. There was, however, a tendency favouring intravenous therapy in the following subgroups: males, Australian-born, reduced disease activity and those with an associated peripheral arthritis. There was also a tendency towards shorter travel time to an infusion centre for patients who received intravenous therapy. The number of participants who either agreed or strongly agreed with each of the proposed statements is dis-
Table 1: Percentage of patients who either strongly agreed or agreed with the decision motive mentioned, among the patients treated with intravenous or subcutaneous TNF-alpha inhibitors, respectively. Decision motives mentioned by a majority of patients treated with intravenous TNF blockers: Percentage An infusion is more convenient than injections. Once the infusion is done, I can forget about medication for 6 weeks. 97% I feel more secure visiting an infusion clinic where a trained professional can supervise the delivery of my medication. 90% I would be able to use the infusion time productively by reading, listening to music, etc. 86% Visiting the infusion clinic allows me to see trained personnel who can answer any question that I may have about my medication 69% I don’t like needles and I don’t feel comfortable with self injecting. 62% I feel anxious about preparing the medication for self injecting. 52% Decision motives mentioned by a majority of patients treated with subcutaneous TNF blockers: Injections allow me to have a lot more flexibility and independence by choosing the time of the day to have my medication. 80% Injections only take a few minutes once or twice a week and are far less disruptive than attending an infusion clinic for half a day. 73% An infusion time of 4 hours (plus travel time to and from the infusion clinic) takes too much out of my day. 73% By injecting the medication myself, I feel more in control of my treatment 62%
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ASIF News No. 10 played in Table 1. Few patients within either group identified errors with dosing or administration of treatmentas major determinants of their choice of therapy.
Conclusions Apparently, the administration time and flexibility with the timing of treatment play an important role in the choice of treatment. Also safety aspects – for one group the administration of treatment by trained professionals in a hospital setting, for the other group a sense of control over their treatment through the use of selfadministered treatment – were major determinants of choice. The high level of satisfaction with
Anti-TNF therapy treatment response in our clinic suggests that shared clinical decisionmaking between clinicians and patients may be desirable for AS patients commencing anti-TNF therapy. The results of the study strongly imply that when therapy options with similar efficacy but differing impact on lifestyle are available, clinicians should proactively discuss these options with their patient and should offer the choice of therapy to the patient. ◄ Address of the author mentioned last: Austin Spondylitis Clinic Austin Health, P.O. Box 5555, Heidelberg, Victoria 3084, Australia Source: Shortened patient-adapted version of a scientific article originally published in Clinical Rheumatology vol. 28 (2009) p. 599–602
What will be your choice? © Copyright Christian BOB Born, Freiburg, Germany
Journal editors: If an article published in your journal could be of interest also for patients
with ankylosing spondylitis in other countries, please submit an English version for ASIF News as Word file to the ASIF secretary (firstname.lastname@example.org). Also reports on special activities of your society are very much welcomed. If possible, submit the figures also in JPG format. Thanks!
Christian BOB Born a portrait, by Dr. Jon Erlendsson, Horsens, Denmark The freelance illustrator and cartoonist Christian Born with the pseudonym BOB lives together with his wife and their two children in Freiburg, Germany. As far as their little boys “allow it”, he draws cartoons and illustrations for newspapers, books, calendars, post cards and flyers. Occasionally he also gets the chance to work for Amnesty International and other institutions. He works on different subjects, among them one related to illness and health. The first time I was amused by BOB’s cartoons was in the Morbus-BechterewJournal of the AS association in Germany. Some of his cartoons have also been brought in ASIF News (see ASIF News No. 4, 8, 9, and cartoon shown above). BOB was born in 1957 and studied painting, drawing, and graphics in several artists classes, followed by studies in the Provence (France) and New Mexico (USA). He was awarded several prizes, among them the Gedok prize 1980, and he received the 1st prize in a television competition with the subject “trees”. His works have been shown in several exhibitions, in Germany for instance in Freiburg, Hamburg and Baden-Baden. He likes playing with words when he gives names to his works. His motto is „Sometimes you have to stand life on its head, otherwise it forces you down on your knees“. If you like to see more of his cartoons, please visit his homepage: www.bob-born.de or enter “Christian BOB Born” in artist search of: www.toonpool.com ◄ Journal editors: If you intend to publish one of BOB’s cartoons in your journal, ask for permission by writing to Post@BOB-Born.de Page 18 of 19
ASIF News No. 10
ASAS Handbook and ASAS Slide Library now available by Prof. Dr. Ernst Feldtkeller, ASAS member and scientific advisor of ASIF, München, Germany The Internet web-site of the Assessment of SpondyloArthritis International Society (ASAS, www.asas-group.org) becomes more and more interesting. An ASAS handbook (in PDF format) and an ASAS slide library (with slides downloadable in PDF or PPT format) are now available in the web-site of this international working group of spondyloarthritis researchers.
The ASAS handbook The “ASAS handbook: a guide to assess spondyloarthritis” has originally been published in June 2009 as supplement issue of the Annals of the Rheumatic Diseases. Like the ASIF booklet on assessment scores and classification and diagnosis criteria, it contains all the assessment scores and criteria for the spondyloarthritides published recently. The main advantage of this 44pages ASAS booklet is, however, that it also contains 25 pages with 84 magnetoresonance images and 32 X-ray images by which all the possibilities and pitfalls of diagnostic imaging are demonstrated.
For patients with ankylosing spondylitis, images of their own sacroiliac joints or spine are often not at all understandable. These educational examples are a good introduction for those who are interested to understand these images.
The ASAS slide library For those who look for educational slides for their lectures on any aspect in the field of spondyloarthritis, the ASAS slide library is a real storehouse. The slides are available in English, Spanish, Portuguese, Russian and soon also in German language. Search of a specific slide out of more than 200 slides is made possible by categories or keywords. The 8 categories are • Epidemiology, • Pathogenesis, • Diagnosis • Imaging (X-ray, MRI), • Clinical manifestations, • Outcome, • Treatment, and • Juvenile Spondyloarthritis.
The use of the slides is restricted to educational use. Commercial use is not allowed. Many of the illustrations of the ASAS handbook are also contained as slides in the ASAS slide library. References to the original source are given in the bottom of every slide. ◄
Available in ASIF Website: ● Aims of ASIF and of ankylosing spondylitis societies, ● Updated data on all AS societies worldwide, ● How to set up a new AS patient organisation, ● How to become an ASIF member organisation, ● The ASIF constitution, ● ASIF history, ● Contents of former ASIF News issues, ● Scientific studies initiated by ASIF ● Books on ankylosing spondylitis in different languages, ● Guidebooks for AS patients in other languages, ● Updated forms for the assessment of AS in different languages ● Call for participation at the survey on AS and offspring. To view these pages visit the ASIF website at
ASIF Executive Committee: President Vice President Secretary Treasurer
Seoirse Smith, Ireland Hedley Hamilton, Great Britain Ken Mulholland, Canada Torben Jørgensen. Denmark
Additional Committee members: Doç. Dr. Tuncay Duruöz, Turkey Jane Skerrett, Great Britain Cor van Drogen, Netherlands
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