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01. 2025
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In this issue
Editorial
- EULAR PARE Conference 2024 celebrates a decade of PRP involvement in research
- EULAR PARE Best Practice Fair 2024
- Volunteering with EULAR PARE
- Joint EMEUNET / Young PARE Webinar
HIPPOCRATES Prospective Observational Study (HPOS)
- EULAR PARE Editorial Board
EDITORIAL
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Dear Friends,
We hope everyone had a good start into 2025.
What an inspiring EULAR PARE Conference we enjoyed in November. Read more about it, our Patient Research Partners and PARE Best Practice Fair in this issue.
We also look back at our WAD events and the joint EMEUNET / Young PARE Webinar.
So, if all that motivates you sufficiently, remember our PARE Volunteer’s Vacancy Call in March.
Peter Boyd
EULAR PARE Committee Chair
EULAR PARE Conference 2024 celebrates a decade of PRP involvement in research
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The EULAR PARE Conference 2024 provided a unique opportunity to promote the implementation of the updated EULAR recommendations for the involvement of Patient Research Partners (PRPs).
Over 120 delegates gathered in Brussels to share best practices and discuss experiences with collaborative research. A highly interactive programme offered a wide range of expert presentations followed by many small group activities. Delegates participated at ten tables during a three-hour World Café. Moderated by table hosts, they looked back on the development of the EULAR PRP network, discussed current challenges and sought solutions.
During 6 workshops the delegates engaged in more in-depth discussions. The workshop topics varied from working in international consortia to establishing a national PRP network.
Lessons learnt
The conference resulted in many great ideas to sustain and expand the PRP network. It was suggested to create a comprehensive toolkit to implement the EULAR PRP recommendations and to support the recruitment, training and support of PRPs on national level. This toolkit should include a framework for defining mutual expectations right at the start of a project and also provide guidance and training opportunities for researchers.
Finally, it was acknowledged that further development cannot be realised without appropriate professional support, both on national and international level.
Maarten de Wit
EULAR Study Group for Collaborative Research Chair
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“The EULAR PARE Conference 2024 in Brussels celebrated the intrinsic value of Patient Research Partners (PRPs) in rheumatic and musculoskeletal diseases (RMDs) research. It featured expert-led plenary sessions, a World Café session led by Maarten de Wit, and diverse workshops that actively engaged both experienced and novice PRPs.
Together with patient representatives we worked together to identify barriers and challenges for recruitment of new PRP’s in collaborative research, emphasising the need for formal training for both researchers and PRPs. Grateful for many lessons learnt and experiences shared to enhance my PRP journey!”
Jane Giudice
EULAR Patient Research Partner
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"Brussels 2024 was my third EULAR PARE Conference. This time it focused on PRP involvement in research. Also, as an experienced PRP I got new insights and took a lot of benefit from the exchange with my PRP peers. It was great to meet old friends again and make new ones, to discuss and also to have fun!"
Peter Böhm
EULAR Research Committee Member
EULAR PARE Best Practice Fair 2024
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At the EULAR PARE Conference 2024 the represented PARE organisations and institutions had the opportunity to share best practices. 63 posters were submitted. As always participants voted for their three favourite projects.
The winner was:
"The Bravery Book - Malu´s fantastic hats for dreadfully annoying rheumatism days!“
Presented by Caroline Kirsten, Deutsche Rheuma-Liga, Germany
Check out the EULAR PARE Events platform to explore the runner up from Ghana and third place from Austria among many other inspiring activities.
Did you see a best practice example that you would like to implement in your country? If so, you may wish to apply for the EULAR PARE Knowledge Transfer Programme to enable you to replicate the activity in your country. Applications will open on 15 March and will be accepted until the deadline on 01 July. More information will soon be available! →
Volunteering with EULAR PARE
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"My name is Fran Carreira from Spain. I am a retired architect (due to my condition) and as such my aim has always been to improve other people's lives as much as I can.
As a PARE Volunteer – I am a member of the EULAR PARE Editorial Board - I aim in the same direction, I love learning from others and sharing with others the little things I know if I feel they may help them.
PARE is like a family to me; the care for others, the empathy, the will to help, the chance to get to know other cultures, languages and perspectives is what makes Volunteering with EULAR PARE an experience I strongly recommend to anyone."
Fran Carreira
EULAR PARE Editorial Board Member
Our next EULAR PARE Volunteers Vacancy Call will be launched in March 2025. →
Joint EMEUNET / Young PARE Webinar
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It was exciting to moderate this joint webinar on the updated EULAR recommendations for the involvement of Patient Research Partners (PRPs) in rheumatology research together with Milena Bond from Italy.
More than 30 participants joined us to learn more about the updated recommendations and engaged in a lively discussion on their implementation.
Presenters included Simon Stones, EULAR PARE Committee Chair-elect and Krystel Aouad, Leader of the EMEUNET Sub-Committee, Visibility & Global Affairs and others.
Tanita-Christina Wilhelmer
EULAR PARE
Communications Sub-Committee Member
You can watch our webinar recording which is available on the EULAR YouTube channel →
HIPPOCRATES Prospective Observational Study (HPOS): Web-based prospective cohort study on psoriatic arthritis across Europe
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HPOS is an online study designed to identify risk factors for predicting psoriatic arthritis (PsA), evaluate the burden of psoriasis on patients in Europe, and assess a screening tool for early PsA detection.
It stands out for being shaped by patient partners across Europe, who co-designed research questions, study methods, participant experiences, and adaptive questionnaires (surveys that adapt to the respondent by asking different questions based on their previous answers). HPOS aims to identify 25,000 participants to take part - 4,000 individuals are already participating so far.
Funded by Innovative Medicine Initiative (IMI) 2 Joint Undertaking (JU) grant agreement No 101007757 with support from the European Union’s Horizon 2020 research and Innovation programme and EFPIA. Sponsorship by University of Oxford with support from University College Dublin.
Study participation made easy!
Fully online: consenting, registration and follow ups are all online and accessible across devices (75% of participants used mobile devices for study tasks)
Convenient sampling (optional): Some participants who are interested in providing samples will be asked if they are willing to collect them at home using a simple, self-use sample kit with a prepaid return envelope.
Who is eligible to participate in HPOS?
Any adult with psoriasis without pre-existing PsA. People with PsA are not able to take part in HPOS. However, since psoriasis can run in families, you may know someone with psoriasis who would like to join.
Learn more information about HPOS here →
EULAR PARE Editorial Board
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- Corinna Elling-Audersch, Working Group Leader, Germany
- Jeanette Andersen, Denmark
- Nele Caeyers, PARE Communications Sub-Committee Chair, Belgium
- Francisco Javier Carreira Roca, Spain
- Simone Makri, PARE Newsletter Editor, Cyprus
- Pamela de Rosa, Italy
- Anja Römling, Belgium
- Tanita-Christina Wilhelmer, Austria
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