Participate in Research
Helping shape the future of care — together
Families, youth, and community members play an important role in advancing research in pediatric rheumatology. By participating in research, you can help improve understanding, influence care, and contribute to better outcomes for others.
Participation can take many forms, and every contribution helps move research forward.
Why Participate
Research participation helps expand knowledge, improve treatments, and ensure that care reflects real-world experiences.
For many families and youth, it’s also an opportunity to:
- Contribute to meaningful change
- Share lived experience
- Support future patients and families
- Be part of a broader community effort
“Being part of research made us feel like we were contributing to something bigger. It gave us a sense of purpose during a challenging time.”
— Parent, Cassie + Friends Community
Ways to Get Involved
Discover different ways to participate in research.
There are different ways to participate, depending on your comfort level and interest.
Examples:
Research studies
- Participating in clinical or observational studies
Surveys and questionnaires
- Sharing experiences and perspectives
Focus groups or interviews
- Providing feedback to help shape research and programs
Advisory roles
- Contributing to committees or research planning
What to Expect
Participation in research is always voluntary. Before taking part, you will receive clear information about the purpose of the study, what is involved, and any potential risks or benefits.
You can ask questions at any time and decide what feels right for you and your family.
Privacy + Confidentiality
Protecting your privacy is an important part of any research process. Personal information is handled in accordance with ethical and legal standards, and you will be told how your information may be collected, used, and protected.
You can ask questions before deciding whether to participate, and in many studies you may withdraw at any time.
Who Can Participate
Research opportunities may be available for children and youth living with rheumatic disease, parents and caregivers, and in some cases healthcare providers or community members.
Eligibility depends on the specific research initiative, and each opportunity will explain who can take part.
Get Started
Explore current opportunities or reach out.
If you’re interested in participating in research, you can explore current opportunities or reach out to Cassie + Friends to learn more.
Related Links
Making a difference together.
Every contribution helps build a stronger understanding of pediatric rheumatic disease. By participating in research, you are helping shape better care, improved treatments, and a stronger future for children and families.
Research
Projects
PAVE
STUDY
CARE To Cure Approach
Our
Stories
FAQs
Research participation should feel clear, informed, and voluntary. These FAQs help explain what families, youth, and caregivers can expect before deciding whether an opportunity is right for them.
Is participation required?
No. Research participation is always voluntary.
Can I ask questions before deciding?
Yes. You should receive clear information about the study and can ask questions before deciding whether to take part.
Who can participate in research?
Eligibility depends on the study. Opportunities may be available for children, youth, parents, caregivers, healthcare providers, or community members.
Will my information be private?
Research studies should explain how your information will be collected, used, and protected before you agree to participate.
What kinds of research can families join?
Opportunities may include surveys, interviews, focus groups, advisory roles, clinical studies, or observational studies.
Support Us
Your Voice Matters
Research is strengthened by the voices and experiences of those it aims to support. Your participation with Cassie + Friends helps ensure that research is meaningful, relevant, and impactful.