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CSRG’s Newsletter

Winter 2013

ASM 2012 - Vancouver SSC & CSRG’s 6th Joined Meeting The 6th Annual Scientific Meeting (ASM) of the CSRG took place on September 28th and 29th, Hilton Metrotown Vancouver, BC, in conjunction with the annual meeting of the Scleroderma Society of Canada (SSC) and the ASM of the Canadian Network for Improved Outcomes in Systemic Lupus Erythematosus (CANIOS). These meetings were attended by investigators, researchers, nurses, trainees, and consumers. The attendees had the opportunity to meet and discuss ongoing research in the field of Scleroderma and Lupus.

Ms. Fox (Scleroderma Society of BC) & Dr. Gornitsky (Dentist, CSRG)

There was a Welcome Dinner for all CSRG and selected SSC members on Friday night followed by a Dessert reception. While enjoying delectable cakes, cookies, and pies, attendees perused CSRG's Students posters summarizing ongoing research projects. Interactions were quite lively and very informative.

rewarding experience for everyone patients so much throughout the years that it would be a involved. shame to end here. We We would like to thank the therefore still hope to join Scleroderma Society of Canada SSC whenever they meet (SSC) and the Scleroderma annually and we will apply for Association of BC for welcoming us funds in order to achieve this to Vancouver and helping us with goal. this event.

On Saturday, the CSRG held its annual scientific meeting, where trainees presented to members their projects in greater detail. Two breakout sessions took place after lunch. Investigators, researchers and trainees discussed new research in basic and clinical science. A CSRG coordinators meeting was held while the breakout sessions were underway. Workshops for SSC members and consumers were held during this time. Many workshops were given by CSRG members.

A special thank you to the Scleroderma Association of British Columbia for hosting this meeting and to Bob Buzza, Robyn Fox, Joan Kelly, and their team of amazingly dedicated volunteers for their precious help in Vancouver, prior and during this successful meeting!!

Our last meeting…

The CIHR research grant that financially supported these scientific meetings since 2007 is ending March 31st of this year. Sadly, this 6th meeting was therefore our last This year’s ASM was a meaningful and one. These joined meetings have given clinicians, researchers, and At the end of the two-day conference, the CSRG and selected SSC members met together for a final dinner on Saturday night.

WINTER 2013 More inside... Ø INSYNC Page 2 Ø Our 2011-2012 Trainees and 2012 Summer Students Page 3 Ø Ongoing projects Page 4 Ø Our new website and more… Page 5

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CSRG’s Newsletter

In November 2012, the CSRG joined forces with other scleroderma cohorts around the world to create the International Systemic Sclerosis Inception Cohort or INSYNC.

Winter 2013

published extensively about many aspects of SSc, these studies have been based on prevalent cohorts with subjects of many different disease durations.

Studies on topics such as mortality in SCc have been A first meeting hampered relatively by small "N" During a 2-day meeting that size or have utilized the took place at the Jewish administrative data. General Hospital in Montréal, selected members of the This large multi-national, multiCSRG (Drs. Baron, Hudson & ethnic cohort will be able to proPope) sat down with other vide much more accurate data Directors of scleroderma than previous studies. Accuradatabases from the United tely determining the predictors of States (Dr. Frech), Spain (Dr. mortality will allow us to direct Carreira), Germany (Dr. future therapeutic trials at those Hunzelmann) and Australia with the highest risk. (Drs. Proudman, Stevens, & In addition, studies that will come Nikpour) to discuss ways to from the data and biologic speciincrease their ability to perform mens from this inception cohort research. Ms. Maureen Sauvé, will be unique. It has been very President of the Scleroderma difficult for any one research Society of Ontario and Presigroup to acquire large numbers dent of the Scleroderma of bio-samples from recent onset Society of Canada, also disease. This new cohort will be attended this first INSYNC able to provide those samples meeting. and will permit many studies of Significance and outcome of bio-markers and of pathophysiologic mechanisms of the disease this new collaboration near its onset, which has not We believe that this col- been possible before. laborative work will result in the formation of the world’s This cohort will also allow us to first large inception cohort of study the natural history of the subjects with systemic sclero- disease in greater detail than has sis (SSc). Although separately, ever been performed. It will allow these research groups have us to determine clinical and laboratory markers of significant 2

disease progression so that treatment studies can be initiated in those at most risk. The creation of INSYNC will without a doubt strengthen CSRG's relationship with scleroderma research groups around the world who, like us, aim to better understand scleroderma and its symptoms in order to better treat people living with the disease. What's next? The next step is for each cohort to work on harmonizing their data with the data from the other cohorts. Data harmonization will allow comparisons, a key process aimed at better identifying similarities and differrences between scleroderma patients living in different countries.

Thank you very much to our International colleagues for attending this one-of-a-kind meeting! We are confident that this initiative will help us to improve the life of people living with scleroderma!

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CSRG’s Newsletter

Winter 2013

Congratulations to our Trainees and Summer Students!! Our 2011-2012 Trainees Trainee: Ilya Razykov Mentor: Dr. Brett Thombs Title: The Utility of the Patient Health Questionnaire-9 to Assess Suicide Risk in Patients with Systemic Sclerosis.

Trainee: Katherine Milette Mentor: Dr. Brett Thombs Title: Improving Depression Screening in Rheumatology Clinics: Detection of Persistent Versus Acute Depression in Scleroderma Patients

Trainee: Ho, Yuen Yee Mentor: Drs. John Mort, Peter Roughley, and Anneliese Recklies Title: Chi3L1 production characterizes dermal cells in patients with systemic sclerosis

Trainee: Monique Arts Mentor: Dr. Marc Servant Title: The effects of autoantibodies from scleroderma patients on blood vessel cells.

Trainee: Daphna Harel Mentor: Dr. Russell Steele Title: Measuring Disease Severity in Patients with Systemic Sclerosis

Trainee: Irvens Fanélus Mentor: Dr. Anie Philip Title: Altered caveolin-1 function is linked to impaired receptor degradation in scleroderma

Our 2012 Summer Students Trainee: Edward Zhang Mentor: Dr. Marie Hudson Title: Electrocardiogram Abnormalities in Systemic Sclerosis Trainee: Charles Massie Mentor: Dr. Marie Hudson Title: Absence of correlation between antiRo52/TRIM21, anti-Ro60/SS-A and prolongation of corrected QT interval in systemic sclerosis: a multicenter study of 558 adult patients

Trainee: Achyuth Syam Chandra Mentor: Dr. Brett Thombs Title: The Efficacy of Opioid Antagonists on Pruritus Caused by Various Medical Conditions A systematic review. Trainee: Katherine Thompson Mentor: Dr. Andrew Leask Title: Expression of CCN family members in fibroblasts

Trainee: Surya Sakr Mentor: Dr. Anie Philip Title: Dysregulation of TGF-beta signaling in Scleroderma: Role of Endoglin

Trainee: Mat Stephenson Mentor: Dr. Fritzler Title: Autoantibodies to 3-hydroxy-3methylglutaryl-coenzyme A reductase (HMGCR) in the CSRG Cohort

Trainee: Julie D’Aoust Mentor: Dr. Marie Hudson Title: Anti-PM/Scl antibodies are associated with a distinct SSc clinical phenotype

Visit our website to read lay summaries of these projects:


CSRG’s Newsletter

Winter 2013

Ongoing CSRG Projects Many projects have been spearheaded by CSRG researchers, clinicians, Trainees, summer students and collaborators since the Group's inception in 2004. Here are some of the projects that we have been focusing on in 2012:

Ø Soluble HLA in Systemic Sclerosis (Dr. Mervyn Gornitsky, Dr. Murray Baron) Ø Frailty and Scleroderma; investigation of a multi-system disorder (Dr. Evelyn Sutton Ø Ø Ø Ø Ø Ø Ø Ø Ø

Ø Ø Ø Ø Ø

Dr. Kenneth Rockwood) Autoantibody studies - Th/To, fibrillarin, HMGCR, Pm/Scl, ANA negative subjects (RF/CCP subjects; Dr. Marie Hudson, Dr. Marvin Fritzler) EKG - review of CSRG data and comparison with controls; QTc and Ro association (Dr. Marie Hudson) Disease activity and damage indices; global score for Medsger scale (Dr. Marie Hudson) Different measures of DLCO in SSc (Dr. Marie Hudson) Regional differences in autoantibodies and environmental exposures, comparing with controls from Oral health study (Dr. Marie Hudson) Investigation of ANA and ENA Negative SSc Sera (Dr. Marvin Fritzler, Dr. Marie Hudson) Effect of menopause on skin thickening in systemic sclerosis (Evelyne Vinet, Dr. Sasha Bernatsky, Dr. Marie Hudson, Dr. Murray Baron) Longitudinal change and predictors of decline in FVC in the CSRG cohort (Dr. Marie Hudson, Dr. Murray Baron, Dr. Russell Steele) Mortality in a Retrospective Inception Cohort of Systemic Sclerosis (Dr. Mandy Nikpour , Dr. Murray Baron, Dr. Patricia Carreira, Dr. Tracy Frech, Dr. Marie Hudson, Dr. Nicolas Hunzelmann, Dr. Janet Pope, Dr. Susanna Proudman, Ms. Maureen Sauvé, Dr. Wendy Stevens) What are the correlates of poor GI disease in a large, unselected cohort of SSc subjects (Dr. Genevieve Gyger) Microarray analysis of serum stimulated Scleroderma Fibroblast cells (Dr. Miltiadis Paliouras) Salivary sHLA-G in Scleroderma Patients and Controls- A Pilot Project (Dr. Mervyn Gornitsky, Daniel Salah) Autoantibody studies - Th/To, fibrillarin, HMGCR, Pm/Scl, ANA negative subjects (with IP data from Florida), RF/CCP subjects (Dr. Marie Hudon, Dr. Marvin Fritzler) Reliability of digital ulcers outcome measurements in SSc (Dr. MurrayBaron)

THANK YOU! Many thanks to those who have dedicated and are still dedicating time, energy and expertise to help with CSRG projects. These will certainly contribute to better understanding scleroderma and better treating people suffering from it.


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CSRG’s Newsletter

Winter 2013

The CSRG has a NEW website We recently gave a new life to our website. Please visit our new website: In 2012…

Canadian Rheumatology Asso ciati on (CRA) Date: February 13th-16th, 2013 Location: Fairmont Chateau Laurier, Ottawa, ON For more information:

Ø Over 1350 scleroderma patients across Canada were being assessed annually and entered in our patients registry. Of those, 52 were new patients enrolled in 2012. Thank you! Ø We received over $130,000 in donations to help with our research projects and research activities. Thank you!

We would love to hear from you! If you have any questions or comments about the content of this newsletter, or would like to contribute to our next issue, please do not hesitate to contact Joanne D’Aoust via email:

CSRG Director: Dr. Murray Baron National Study Coordinator: Suzanne S. Taillefer, PhD Managerial support: Joanne D’Aoust Active Recruiting Rheumatologists: Dr. Murray Baron, Montréal Dr. Peter Docherty, Moncton Dr. Paul Fortin, Québec Dr. Tamara Grodzicky, Montréal Dr. Marie Hudson, Montréal Dr. Niall Jones, Edmonton Dr. Elzbieta Kaminska, Calgary Dr. Nader Khalidi, Hamilton

Dr. Maggie Larché, Hamilton Dr. Sophie Ligier, Montréal Dr. Ariel Masetto, Sherbrooke Dr. Janet Pope, London Dr Jean-Pierre Mathieu, Montréal Dr. David Robinson, Winnipeg Dr. Evelyn Sutton, Halifax Dr. Carter Thorne, Newmarket Collaborators: Dr. Sasha Bernatsky Dr. Marvin Fritzler, Adv. Diagn. Lab. Dr. Mervyn Gornitsky, DDS Mr. Phil Hughes, Patient Representative Dr. Mohit Kapoor Dr. Kevin Keen, Statistician Dr. Dinesh Khanna, UCLA Dr. Andrew Leask Dr. John S. Mort Dr. Warren Nielson, Psychologist Dr. Anie Philip Dr. Anneliese Recklies M. Normand Ricard, Scleroderma Society of Canada & Sclérodermie Québec

Dr. Peter Roughley Ms. Maureen Sauvé, Scleroderma Society of Canada & Scleroderma Society of Ontario Dr. Marc Servant Dr. Russell Steele, Epidemiologist Dr. Brett Thombs, Psychologist Dr. Mark Trifiro, Endocrinologist Don’t hesitate to contact Suzanne S. Taillefer if you have any questions about the CSRG, its activities, or this newsletter: Please visit our NEW website:

CSRG 3755, Cote Ste-Catherine Road Room A725 Montréal, Québec H3T 1E2


CSRG Winter 2013 Newsletter  

CSRG Winter 2013 Newsletter

CSRG Winter 2013 Newsletter  

CSRG Winter 2013 Newsletter