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miserable and sleeping on the couch when I have had a winter cold and have been coughing through the night. They were very worried about COVID as many children were, trying to negotiate when to worry and when not to worry but we explained we would mind us all very carefully if any of us did get it, which we all eventually did. Thanks to the vaccines the experience was mild for us all.

Sandy toes and salty kisses

So that’s sort of how we have explained my CF to our daughters and continue to explain to them. As they are getting older and wiser and their knowledge base increases so too will the level of detail of our explanations for their salty Daddy.

My most cherished father’s day gift hangs close at my desk - a holiday souvenir that means so much more to us and the world to me: “Sandy Toes and Salty Kisses”.

I always knew I wanted to be a Mam but because I have CF, myself and Nigel (my husband) decided he should go for genetic testing. But as things turned out, I was pregnant before the results came back!

People used to ask me if I was worried that the baby would have CF. Of course I was worried but I couldn’t let that over take me. I used to say ‘sure if the baby has CF, who better to be her parents than us!’

Abigail arrived a bit early and was a tough little one from the beginning. Unfortunately, I became quite ill when she was a week old and had to go to hospital, so Nigel was alone with a one-week-old premature baby who needed feeding every three hours and took an hour and a half to feed! It was tough but it was the start of a very close relationship between the two of them.

Nigel and I always took the approach that we would ‘see how we go’ so we never had a sit-down to discuss how or if we should tell Abigail that I had CF. CF was, and is, a part of our lives. It was just natural that it be a part of Abigail’s too. We weren’t going to hide it from her though I will admit I tried to protect her from elements of it by keeping her out of the clinics and hospitals. I was afraid it might frighten her. But as she got older, she started to come and get familiar with the medical environment.

And that is something we were very aware of - making sure we were giving her information that she could digest and understand. It had to be appropriate for her age. Everyone knows their own child and what they can handle, and it is important to know what to say and what not to say. I also read books to her about CF when she was little to help her understand and I remember teaching her how to do IVs with me too. I showed her how to do it properly, with the push/pause technique and everything and I ordered special gloves for her to wear. I made sure she was involved in every aspect of CF from a young age to take the fear factor out of it. My thinking was that I could show her that IVs are what would make me better again and make me be able to be Mammy again, they were a good thing.

Of course, when I was in hospital, we needed a hand and either my or Nigel’s Mam were there to help us out. We tried our best to keep Abigail in her usual routine, her own bed, her own space for the times when I wasn’t around, and tried to make sure those periods weren’t upsetting for her.

So, I suppose, we made it a part of life, because it is a part of our life. I never realised though how relaxed we were about medication and things like that until other children came into the house. I’d suddenly realise ‘Oh goodness, there are syringes over there’ or something. Abigail was just so used to it, I’d forget sometimes that other children weren’t!

And I think all those things are why she is so good with it. Last year, I collapsed in the sitting room. Nigel was at work so Abigail had to take up the reins. She rang my Mam and asked what medicine she could give me. Then she rang our neighbour who came down and rang the ambulance. Abigail was brilliant. She didn’t panic, she stayed strong and wasn’t afraid.

I know other families will do it differently but I suppose that showed me that for us, it was the right way to approach it.

We are a very tight family and when the chips were down, you really gel. You have to pull together and be there for each other and get each other through the rough patch to come out the other side. In a family, everyone is in it together so to other parents with CF out there, I would say involve your children as much as you can. For us, it took the fear out of CF and made us closer in the process.

My name is Abigail McGrath and I am 13 years old. My Mam is Carol and she has CF. I always knew Mam had CF. I just grew up with it - it was just another part of our life.

When I was little I remember Mam reading stories to me. We read all sorts of stories but Mam read books about CF to me too. I can’t remember the name of them now – I think they were written by a girl who had CF - but I remember them well.

I grew up knowing that Mam would be sick sometimes and would need to do IVs or go to hospital. I went for some check-ups with Mam but not many - mostly I stayed home. But if Mam was in hospital for a long time, I’d go in and visit.

Actually, it was kind of fun when she was in hospital, because my Nanny would come and help me and Dad out and I loved that. I have two Nannies and one doesn’t drive, so when that Nanny came, it was even more exciting.

I remember one time Mam was in hospital for a few weeks. I was in first class and it was my turn to bring Fergal the Frog home from school. We had to take turns to bring home this frog teddy and bring him out and take photos or write in a copy what we had done with him. Because we were visiting Mam, I took him to the hospital. He got a wristband and everything! It was so funny! And the next day when I brought him back to school, sure no one had a story like mine to tell.

But when Mam was at home, I always wanted to help her. She taught me how to do IVs properly when I was little so I could help. I remember practicing with the needles – I had to inject an orange! I loved when Mam had to do her IVs because I loved helping her. I used to get out my gloves and they’d be hanging off me, even though they were the smallest size Mam could get, and me and Mam would have fun doing them.

CF being part of life meant I was never scared of it. Mam and Dad had taught me what I needed to do to help Mam or if an emergency happened and so last year, when Mam collapsed in the sitting room and I was at home, I knew what to do. I didn’t panic. I wanted to ring an ambulance and kept saying that to Mam but in the end, I rang my Nanny to find out what to give Mam, and our neighbour rang the ambulance for us.

The hardest thing that day was waiting for the ambulance because it took so long to get to us. I was on the phone to the CF nurse giving out about it – Mam needed more help than what I could give and I was cross that the ambulance wasn’t there. My Dad even got back from work quicker than the ambulance. So yeah, I was worried, but not scared.

That summer Mam was in hospital and everyone jumped in to help. I was at Pony camp and had loads of activities to keep me busy. Mam says I handled things around then ‘like a boss’ that day and I think that was because CF wasn’t anything different to me. Mam and Dad always taught me about it and so even when you’d see medicines around the house or syringes or something, I wasn’t interested in them. Other little kids might think they were sweets and that kind of thing, but even though I was little, I knew not to touch them. The only time I did was to bring them to Mam!

So, I think the way Mam and Dad involved me made me curious, not afraid. I was definitely curious - always asking the nurses questions and even when Mam was in ICU that time, it was the same. I asked lots of questions because this is my life. And that’s what CF is to me - just an everyday part of life.

Deciding to have children is a big step for all couples but when you have CF it makes the decision a little more complicated. Many questions had to be asked.

Will I have difficulty getting pregnant?

Is my health good enough for a pregnancy?

What impact will a pregnancy take on my health?

Will I be able to continue taking my regular medications when pregnant, includes antibiotics?

Is it fair bringing a child into the world when I potential have a shorter life expectancy?

The list is endless, so what do you do?

In 1997 I went with my gut instinct and decided the time was right and hoped to be successful. To answer the question, did I have trouble getting pregnant? no, it happened within two months so we didn’t get much time to reconsider with Jamie arriving in May 1998.

For my second child Anna, the doctors were putting a push on me to decide if I was going to have another child as I was now in my 30’s (how ancient, but in fairness for a PWCF at the beginning of this century it probably was).

I never actually sat down with the kids and said “Mammy has CF”, it happened more organically. My treatments were always done in front of the kids, beacuse if I was at home alone I had to supervise while doing treatments.

I was actually on the treatment table getting a long line in my arm and breastfeeding Anna when she was only 2 weeks old (taking multitasking to a new level). It became normal routine life, they knew no different. At times when I refused to get up until treatments were complete we had a few disagreements and the odd tantrum but they soon realised Mam's neb time wasn’t to be interrupted. It's exactly the same with Milo (my grandson) now.

As they got older I included them in my treatments, they would get meds from the fridge and fill my nebuliser for me, recycle the plastic vials, put my IV’s in the fridge when they arrived from Baxter etc.

I was always very honest about CF (in an age appropriate way), however over the years they knew I attended funerals of friends so we would have a chat about Mam doing her treatments and keeping as fit as possible, doing everything in my power to stay well, to increase my chances of being alive for as long as possible. But I do think you have to balance the conversation and appreciate that with life comes death and we can only do our best with what we are dealt. No one knows what life will hold so we can’t live our lives being afraid that the end is near.

For me going into hospital broke my heart for many reasons; being away from the kids is always hard (even now), but it also meant Fran had to be a single parent for that period of time, trying to work, mind the kids, worry about me, come to visit etc. We are lucky to have a very supportive family but I know these times were particularly hard for everyone; Fran, Jamie and Anna, my parents, in-laws. You have to remember my kids were young when medications weren’t as good as they are now, so with each exacerbation the thoughts of life expectancy crept into the heads of the adults.

By living with CF as a family I hope I have taught my kids, that even if you don’t have an equal start in life, with a little extra effort, hard work and determination you can come someway to achieving your dreams. It's not about winning the race of life but travelling the route of your choosing and enjoying the ride even if it is a little like being on a roller coaster.

On the 1st of June Fran and I celebrated 26 years of marriage with a further nine years to boot, OMG 35 years! I have surpassed all life expectancy predictions, we have two amazing children and the dream that I never let myself dream, a grandson, Milo. I’m pretty much floating on air.

When mam asked us both to write a paragraph on being a child of a person with CF, we both looked at each other and said, sure we don’t know anything different. Living with CF is our normal family life.

As we grew up we never felt the need to look up or Google CF as I think we have always known about it, it is our norm. Whenever we had a question, we would just ask and Mam would tell us what we needed to know.

Thinking back though the one thing we both hated was Mam's neb time, but not necessarily for the reason you’d think. It was the noise of her old porta neb, the buzzing drove us mad as we watched TV in the evening with no escape to another room to watch our programs. Now with the Eflow we don’t even realise she is doing her nebs, and thankfully we don’t all have to watch the same TV either!

Now Jamie and I watch on as Milo squeezes the liquid into Mams neb just like we did. When Milo wants Mam to get up and play, we jump in and tell him 'Nanny can’t get up as she is doing her nebs', and at times we have to distract him just like Mam and Dad had to with us.

On the occasions when we visited Mam in hospital, the children’s ward in Castlebar was always a great place to visit. Sometimes we were mistaken as the patients as Mam and the other CF adults were the only adult patients on the ward. Hospital visits always meant treat time after so Dad could bring us home without too much of a fight!

Mam didn’t have a lot of hospitalisation that we remember as she mostly does home IV’s. We could tell when it is time for IV’s as a couple of weeks before hand you might find her asleep on the couch in the afternoon and, dare I say it, was usually the only time she could be a little ratty or sharp with us as she knew a set of IVs’ were coming and it obviously annoys her.

Mam has a very distinct voice which can be husky/hoarse when she isn’t feeling the best. I think it must be a trait as her CF friends sound similar. Mam doesn’t cough as much anymore since starting the Kalydeco 6 years ago, which really does mean there isn’t a daily constant reminder of CF.

When Mam started going to Beaumont more often then Castlebar we were worried and more concerned and thought it seemed more of a big deal. When Mam explained that Beaumont was just the same as Castlebar in regards to appointments we relaxed about these appointments. Trips to Castlebar, were our norm so Beaumont was a little bit of a curve ball.

We do worry that Mam sometimes over does it, especially when she takes on big events. Having said that we are very proud of her commitment and completion of everything she does. She doesn’t take on events lightly and makes sure she is properly prepared for every event no matter what she is doing.

CF isn’t an easy life but Mam always tries to be the optimist in life, living life to her fullest.

Welcome back to Liz Jacques, who has returned to CFI as Mid-West Regional Development Office/TLC4CF based in our Limerick Office. Liz went on maternity leave in August 2021 and has been taking care of baby Finn since his arrival. soon after. He is not a newborn anymore and Liz cannot believe how fast the year has flown by! Congratulations again Liz, we are delighted to welcome you back.

Nicola joined CFI as Public Awareness and Social Media Officer in January 2022. For eight years Nicola was self-employed, partnering with charitable, not-for-profit, public and private sector organisations to work with children with and without additional needs. Following her experience as a volunteer PRO for a local GAA club, Nicola decided to change careers, and graduated from DCU’s Masters course in Public Relations and Strategic Communications in 2021. Aside from work Nicola is Mammy to three energetic young children and enjoys reading and cycling.

Miriam began working with CF Ireland in February 2022. Miriam is a part of the Fundraising team and is the lead coordinator for Malin2Mizen, Cycle4CF, 1in1000 and The Head2Head Walk. Previous to this role, Miriam worked in Philantrophy Ireland as Communications Officer. A graduate from UCD's MA in Arts Management & Cultural Policy and TU's BA in Contemporary Art & Critical Theory, Miriam's background is a combination of cultural, as well as not-for-profit institutions. Outside work, Miriam enjoys discovering new cooking recipes and horror movies.

‘Keep It Up’ is a recent RTE show which brought nine teenage girls together who either gave up or had never played sport. The girls were from all different backgrounds and experiences and formed a basketball team. The programme followed them as they re-engaged with sport with the help of their coach, Emer O’Neill.

One of the nine girls is Ava Li Blount, a PWCF and CFI Member from Wicklow. CFI caught up with Ava to find out all about her experience....

I am part of an all-girl running club called Go Girls in Wicklow. My running coach suggested I put myself forward for it - that would be a good fit.

First, I sent in an introductory video explaining my story. I told them about my experience with exercise

growing up, how I felt I could be judged because I wouldn’t have been at the same levels of others because of the CF. After that, I had a follow up call with the producer who had even more questions for me, and then I got the call telling me that they thought I’d be a perfect fit too.

We filmed for two full weeks last summer (2021) but I didn’t tell any friends at the time. We had to keep it to ourselves and any photos we had from it had to be kept secret till the trailer officially launched. When it did, we covered our social media accounts with it!! It aired recently and everyone knew then!

Growing up with CF meant I had to work harder than others physically. When I lived in Dublin, I didn’t really do sports – I more just went for walks. I used to get red in the face quicker than all the others because

harder and I would cough and cough and cough.

When I hit my tween years, I began to get a bit embarrassed about that and it put me off sport a little.

That’s why I joined the girls running club – to be more active but in a comfortable environment. I’m over that insecurity now and the show just seemed to fit my experiences and I also had a story to tell. And it was an amazing opportunity and experience.

The group were amazing - euphoric even!

and all had different reasons why we weren’t really into sport but one thing we had in common was that our experiences with sport had hurt each of us and left us a little insecure about playing sport.

On day one, we were all finding our feet. We went in strangers but we were all on the same level. We didn’t have to worry about being or looking perfect, we were just playing sport. From the start, we were all sweaty and not worrying about how we looked. Sport was our connection and by the end of the first day, we were friends.

We were together all day every day for 2 weeks and like any team, we got on each other’s nerves at times but we always overcame any issues.

who I am. I am definitely not ashamed of it because without it I wouldn’t be Ava. I’m Ava who loves drama, Ava who loves English, but also Ava who has CF. So telling people depends really. Sometimes I don’t hold back and other times I feel I don’t need to tell people about it at all. My close friends know but not everyone needs to.

The main thing is that I’m not treated any differently if someone does know. And the girls on the team were amazing. They were so supportive and we had such a good chat about it. Actually, I said so much more to them during filming than what was aired on the programme! That was just a tiny part of it. And they definitely didn’t treat me any differently after they found out.

It was so weird. It got worse before it got better! When I was watching the first episode, I didn’t really believe it. Then on the second episode, I started saying ‘oh God’, then questioning myself asking ‘do I really sound like that?’ and that sort of thing. But by the end of the show, it was just really cool. What was the experience like?

It was a magic experience. It was so good. We became stronger, faster and had more stamina.

I’m on Kaftrio for a year now and I’ve been doing really well on it, but to go out and train with a team like this was incredible.

At the end of the series, the coaches had organised a match with another team for us. We played in the National Basketball Arena and it was a perfect way to finish things off. We didn’t win but that didn’t matter. We put our absolute best effort in. We were so happy to show off our new skills and showcase our abilities. Our families came along to support us and everything. I definitely went into the camp a bit insecure and came out so much more confident.

Well, I’m still training with Go Girls and am also doing a bit of coaching with some of the girls at the club. I help pace them and encourage them in their training. Myself and the basketball team are still in touch too. We have a WhatsApp group and have met up a few times since. But my Junior Cert is just around the corner so I have to focus on that for now! But maybe afterwards, I’ll go out with the 'Keep It Up' girls to celebrate the programme and our results!

I’m 14 and I’m in second year. I didn’t get to properly finish 6th class as Covid-19 had just broken out. I had to live out the rest of the year on Zoom. When I started secondary school it was a completely different environment than primary. With the masks in school it was very hard to make new friends.

As a student with Cystic Fibrosis the masks did benefit me by preventing me from getting ill. The school was aware of my CF as my Mam had a meeting with my form teacher and the home school liaison, so my form teacher would always look out for me.

With other teachers I only told them about my illness if I had to or if they asked, otherwise it's none of their business.

I am extremely lucky to have a close friend of mine in the same secondary school as we went to primary together. She will always help me with anything like taking my Creon or telling others about CF. It's always good to have your close friends educated about Cystic Fibrosis. Having people in your corner to support you anytime is important.

The first little while in secondary school is scary but everyone settles in eventually. I've had some of the best times of my life in secondary school already and I'm only in my second year!

Advice I would give to people with CF moving to secondary school is not to be afraid of missing days with your illness and not to be self conscious about taking tablets in front of classmates. If people ask about it all you have to do is give them a simple explanation. Have a good time and don’t care what people think!

Spectrum contributions are always welcome from our members and we'd love to include your piece in the next edition. Email Nicola on ndelaneyfoxe@cfireland.ie with your story and a photo or two and we can take it from there.

Every year, for more than 20 years, Redmonds of Roscrea - The Photographers have held their annual “Happy Days” portrait charity fundraiser and 2022 was no different. Thanks to the support and generosity of their fantastic clients, they were able to raise €3470 with 100% of all proceeds going directly to TLC4CF. To enable this, Redmonds gave their professional time and materials through a complimentary photo shoot and a beautifully finished 7’’ portrait for everyone who donated to this event and worthy cause.

Niamh Sheedy from TLC4CF (pictured) was presented with a cheque by Brian Redmond in their studio in Castle Street. Ms. Sheedy told Redmonds that the proceeds raised from this event will be used to benefit a variety of upcoming activities and needs such as research projects, staffing, clinical trials, nurses, facilities and equipment. TLC4CF was formed in 2008, with the aim of improving hospital and treatment services, facilities and supports for people with Cystic Fibrosis (CF) in the mid-west region of Ireland. TLC4CF is a not-for-profit charity and an affiliated regional branch of Cystic Fibrosis Ireland, covering Tipperary, Limerick and Clare.

Redmonds have shared just some of the hundreds of images that were captured as part of this annual fundraising event. It goes without saying, “Whatever the weather, Happy Days are here again!” It might not actually be Panto time, but it felt like Christmas at TLC4CF when we found out that we were selected as this year's charity recepient for.... (drum roll please)..... the Limerick Panto Society! (Oh no you haven't, oh yes we have!)

The Limerick Panto Society was formed in 1985 and since then they have been keen supporters of many local children’s charities. TLC4CF are delighted to be the charity receipient for 2022 and our very own Niamh Sheedy, Regional Development Officer - CFI/TLC4CF, was only too happy to join Mayor of Limerick, Daniel Butler, and President of TUS, Vincent Cunnane to launch what we know will be a season to remember.

The Panto Society have donated tickets to TLC4CF who can use them in a fundraising capacity. To top that off, on one night of the season all profits will go directly to TLC4CF. The tickets will be for this years production of Cinderella which will be held in The Millennium Theatre, TUS from Dec 27th to January 8th. For more information visit https://limerickpanto.squarespace.com/ or for information on how to support us, contact TLC4CF on tlc4cf@cfireland.ie!

The Cystic Fibrosis Registry of Ireland (CFRI) has recently published its latest annual report for 2020. A summary infographic provides an overview of some key information. The full report is available at www.cfri.ie.

The Chair of CFRI is Professor Edward McKone of SVUH and the CEO is Godfrey Fletcher, a former CEO of CFI. This year marks the 20th anniversary of CFRI. The CRFI was established by CFI and used to be based in CF House in Rathmines before becoming an independent entity based in UCD in line with best international practice.

Some of the highlights we've picked out in the CFRI Annual Report are as follows:

• The median predicted age of survival for a person born with CF has increased from 38 years in 2010 to a remarkable 51 years of age for those born 2020; • 12.5% of the CF population is now over 40 years of age; • The 2020 CFRI report, not prone to exaggerated language, reports ‘CFTR Modulators have revolutionised the treatment of Cystic Fibrosis’ (p27); • These include the drug therapies Kalydeco (2013-present), Orkambi (2017 – present), Symkevi (2019 – present) and Kaftrio (2020 – present); • 68% of the CF population, more than two thirds, were on a CFTR Modulator in 2020; • COVID-19 had a significant impact on outpatient CF care (and likely on in patient care too- CFI); • There was a significant decrease in in-patient treatment in 2020 compared with the previous year and 17% of all outpatient treatment in 2020 was virtual (Zoom, phone etc).

There was only one CF double lung transplant in 2020 again, at least in part due to COVID 19 (see also reports of the Irish Donor Network on the news section of this website that reported a 68% deduction in all lung transplants 2019 to 2020).

For the full report visit www.cfri.ie or contact the CFI office for a hard copy.

1256 participants in CFRI in 2020

36.4% 4.9%

55.4% F508del/F508del

Heterozygous F508del

Non-F508del/ Gating

Not F508del

% of total CFRI population

*shown as a % of total CFRI population

Overall

68% 20%

12%

0 25 50 75 100

% eligible & taking CFTRm % eligible & not taking CFTRm % ineligible

N.B. Patients may be eligible for more than 1 CFTRm. Patients may have switched modulators over the course of the year.

Demographics (number of participants)

Complications (top 3 most prevalent)

Microbiology (% chronic status)

759

66.3%

Reflux 55.1% Sinus 40.2% Diabetes 30.3%

P. aeruginosa 31.2% S. aureus 24.3%

23.2

497

91.5%

Reflux 25.4% Sinus 6.2% Cirrhosis 5.0%

P. aeruginosa 7.9% S. aureus 37.0%

0.41ᵃ

6907 encounters recorded in 2020

Other 15.7% Unknown 0.3%

Outpatient day 36.5%

Virtual encounter 17%

Annual assessment 7.1% CF day unit 23.5%

Who we are & what do we do?

The Cystic Fibrosis Registry of Ireland (CFRI) is the patient registry for those living with Cystic Fibrosis in Ireland. A patient registry is a secure, centralised database, containing health data on people with a specific diagnosis or condition.

The role of CFRI is to collect and record information on the health status of people with cystic fibrosis (CF) who agree to participate. By collecting and analysing information on all people with CF in Ireland, the Registry can better understand their health and wellbeing, and the treatments they receive. We analyse this data for different purposes, all with the wider aims of strengthening Cystic Fibrosis research, improving CF care, and ultimately of improving the health outcomes for those living with CF.

What have we been up to in 2022 so far?

New staff – It’s an exciting time for CFRI. In January 2022, CFRI welcomed 3 new full-time staff to the team: Robyn Doherty (Head of Operations), Paul O’Regan (Research Analyst), and Soumya Joshy (Clinical Research Associate). We also said good-bye to Huw Rees, a Research Associate with us, who has made the exciting move to Australia. Thanks, Huw, for all your hard work over the last couple of years – we’ll miss you!

2020 Annual Report

We published our annual report on 2020 data. This report summarises the data collected in the year 2020. Take a look at our report and accompanying infographic here: https://cfri.ie/annual-reports/.

Reconsenting

Due to changes in GDPR, CFRI need to ask you to re-confirm your consent for the registry to collect your information. If you have not re-confirmed your consent, please contact your CF Centre or the Registry. We attended the European Cystic Fibrosis Society Conference and presented a poster on the impact of the COVID-19 pandemic on health outcomes for people with Cystic Fibrosis using CFRI data. We enjoyed connecting with colleagues from all over the world, and hope to build more collaborations and projects to improve care and health outcomes of those living with CF in the near future.

20 years of CFRI

Did you know that 2022 marks 20 years since the publication of our first ever report in 2002? We are marking 20 years with a special edition of our annual report and an event towards the end of the year. Keep an eye out for forthcoming publications and events to celebrate 20 years!

Research projects

We continue to be involved in lots of research projects relating to CF including the Recover (Real World Clinical Outcomes with Novel Modifier Therapy Combinations in Children with CF) and ICOS (Irish Comparative Outcome Study of CF – Evaluation of the clinical, psychological and economic effects of the Cystic Fibrosis New-born Screening Programme) projects amongst others. CFRI data is used in this research and our research team provide specialist statistical advice and support to the wider research teams.

Want to get involved?

Consent Participating in the registry has indirect benefits in terms of having better information that can help improve planning and delivery of care and services that a person with CF receives. The more people that participate, the better the quality of the information that can come out of the registry. If you would like to participate in the registry, please contact your CF Centre of the CF Registry at info@cfri.ie. Participation is entirely voluntary. You are free to revoke your consent and withdraw from the registry at any time.

Social media We would love if you could follow us on social media. We post updates on our work and on the exciting projects we are working on. Use the QR code to access all our social media channels.

Get in touch Do you have any questions about participating in the registry or about the data we collect? Get in touch with us at info@cfri.ie