You don’t have to take part in drug or treatment trials to help researchers understand scleroderma better. There are other kinds of research projects that don’t involve taking medicines or trying out treatments.
Share your experiences
Your voice can still help lead to improved healthcare, support services and quality of life for other people living with the condition.
Options include:
- Interviews about a particular area of your experience with your type of scleroderma
- Focus groups where you talk about topics the researchers are investigating, with a group of other people
- Surveys about everyday life with scleroderma
These types of studies can be carried out online or in-person. They are often shorter, more flexible projects, allowing you to take part at your own pace.
Become a co-creator in research
People living with scleroderma are increasingly seen as essential partners in research, not just participants.
Researchers use the term ‘Patient and Public Involvement (PPI)’ to describe this relationship.
Through PPI you can:
- Help design research studies
- Suggest questions that matter most to patients
- Review written materials and videos to help make them clearer and easier for everyone to understand
- Work alongside researchers as a valued contributor
How to get involved in non-medical scleroderma research
The Scleroderma Patient-Centred Intervention Network (SPIN) is an organisation of researchers, healthcare services and people living with scleroderma from around the world.
They have a new research project looking at programmes to help people with scleroderma manage the illness and have a better quality of life.
The areas covered by the programmes developed by SPIN include:
- Managing symptoms of scleroderma
- Carrying out daily tasks
- Coping with the emotional impact of scleroderma
- Finding a healthy balance between activity and rest
- Understanding caregiver challenges
Volunteer with the community
Supporting research isn’t always about formal studies – it can also mean strengthening the wider scleroderma community.
Volunteering to support others in the scleroderma community directly supports research progress too. A connected and engaged scleroderma community is:
- More aware of opportunities to take part in studies
- More confident in contributing their experiences
- Better able to share accurate, helpful information with others
It can also help researchers reach a wider and more diverse group of people. For example, if volunteers who are themselves informed about the importance of research and the latest opportunities talk to more people about it, word spreads. This can help make sure more studies reflect real-life experiences and needs.
You might choose to:
- Volunteer with support groups or charities
- Help organise awareness campaigns
- Support others by sharing knowledge and resources
These activities can help to build a stronger, more informed community.
Fundraise to support scleroderma research
Fundraising to support scleroderma research is a powerful way to contribute.
Every donation helps fund vital research into causes, treatments and support for people living with scleroderma.
Ways you can get involved include:
- Hosting a fundraising event
- Taking part in a sponsored challenge
- Organising community activities
- Setting up an online fundraiser
- Donate to an appeal or event
No matter how big or small, your efforts really will help to push research forward.
Sources (14)
- Clinical trials: National Institutes of Health (NIH) https://www.nih.gov/health-information/nih-clinical-research-trials-you/basics
“There are different types of clinical trials: Prevention trials… Screening trials… Diagnostic trials… Treatment trials… Behavioral trials… Quality of life trials…”
- Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries. https://pmc.ncbi.nlm.nih.gov/articles/PMC3086051/
“Concepts identified in all four countries could be used for guiding clinical assessment, as well as interdisciplinary team care and rheumatological rehabilitation for patients with SSc. For a full understanding of the aspects of the disease that were most relevant to people with SSc, people with SSc from multiple countries needed to be involved.”
- Appendix 4: Conduct of qualitative research studies.” https://www.nice.org.uk/corporate/ecd9/chapter/appendix-4-conduct-of-qualitative-research-studies
“Primary qualitative studies evaluated by NICE have generally collected data through […] one-to-one interviews...”
- Achieving effective patient and public involvement in international clinical trials in neurology. https://pmc.ncbi.nlm.nih.gov/articles/PMC7292561/
“We organized 4 pre-award and 2 post-award focus groups.”
- Cancer Research UK. Quality of life studies https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/what-you-should-be-told-about-a-clinical-trial/quality-of-life-studies
“The research team may ask you to complete questionnaires about how the treatment affects your daily life.”
- Michigan Medicine. https://www.michiganmedicine.org/health-lab/scleroderma-research-patients-seen-essential-co-creators
“The research process made it clear […] that involving community members as true partners in clinical research can be crucial to creating well rounded research.”
- British Medical Journal. https://www.bmj.com/content/389/bmj.r647
“Patient and public contributors can and should be included at all stages of research, including identifying key questions, designing, recruiting, selecting outcomes, and implementing findings.”
- SPIN’s (Scleroderma Patient‑Centred Intervention Network) Mission. https://www.spinsclero.com/about
“SPIN was founded by McGill University researcher Dr. Brett Thombs as a partnership of researchers, scleroderma clinicians, patient organizations, and patients, who work together to develop and test online programs to help people cope with important problems related to scleroderma.”
- The SPIN (Scleroderma Patient‑Centred Intervention Network) projects. https://www.spinsclero.com/projects
“SPIN’s Research Projects: The SPIN Cohort; Observational Studies; SPIN Toolkits; Feasibility Testing; Randomized Controlled Trials (RCTs); Dissemination of Programs; Support Groups; Exercise; Caregivers; Making Difficult Medical Decisions in Scleroderma; Nutrition and Diet; Oral Health.”
- National Institute for Health and Care Research. Community engagement and involvement. https://www.nihr.ac.uk/research-funding/global-health/community-engagement-and-involvement
“Across our Global Health Research portfolio, Community Engagement and Involvement (CEI) is the active involvement of communities throughout the research process, using participatory approaches and working in partnership with key stakeholders to improve the relevance, value, and conduct of health research.”
- The Lancet Global Health. https://www.thelancet.com/journals/langlo/article/PIIS2214-109X%2824%2900521-7/fulltext
“Upfront, sustained, inclusive, and meaningful engagement with patients, public, and community stakeholders intended to benefit from trial outcomes is crucial for several reasons.”
- National Institute for Health and Care Research. Community engagement and involvement. https://www.nihr.ac.uk/research-funding/global-health/community-engagement-and-involvement
“Across our Global Health Research portfolio, Community Engagement and Involvement (CEI) is the active involvement of communities throughout the research process, using participatory approaches and working in partnership with key stakeholders to improve the relevance, value, and conduct of health research.”
- Scleroderma Research Foundation. https://srfcure.org
“The mission of the Scleroderma Research Foundation (SRF) is to fund and facilitate the most promising, highest quality research aimed at improved therapies and, ultimately, a cure for scleroderma.”
- National Center for Biotechnology Information. https://pmc.ncbi.nlm.nih.gov/articles/PMC11043411/
“In volume and scope, philanthropy is a significant source of funds.”