Patients & Families


Since CARRA’s founding in 2002, CARRA has recognized the importance of partnering with patients and caregivers along every step in the research process. Patients and caregivers play a key role in activities such as protocol development by assessing feasibility of study participation. Families can also provide important project support by helping to develop recruitment and retention tools to enhance enrollment and sharing project results for faster uptake of new knowledge. Patient and caregiver engagement makes CARRA’s research more meaningful and successful.

Opportunities to Get Involved

Research Patient & Parent Advisory Council

Through support received from the Arthritis Foundation, CARRA formed a Registry Parent/Patient Advisory Committee (RPAC) in January 2020. The RPAC has 2 roles:

  • Share CARRA Registry information with patients and families.
  • Advise CARRA members on Registry related activities.
Who is Involved

The RPAC is co-chaired by JIA moms Melanie Kohlheim and Emily Neu includes 11 members who represent JIA, JDM, childhood onset lupus, scleroderma, CRMO, and auto-inflammatory diseases. New members will be added as new conditions are added to the Registry, current members end their service, or new skills/perspectives are needed to perform RPAC activities.

RPAC Activities

The RPAC holds virtual meetings and develops the content for 3 Registry Newsletters each year. If you are a pediatric rheumatology stakeholder (parent, patient, healthcare provider, payor, industry partner, etc.) and have ideas for newsletter articles or any questions/comments about the registry, please email Melanie [email protected].

Review CARRA Research Grants

CARRA’s peer review research program allows for patient and families to play a role in the grant funding process.

How the Process Works

CARRA members submit their research ideas to a Scientific Review Committee (SRC). The SRC includes researchers, clinicians, caregivers and young adult patients. The committee members review the projects to decide if they should be funded. Patients and caregivers score projects based on 3 things:

  • Impact (Is the project important to the patient community?)
  • Feasibility (Would families want and be able to participate in the study?)
  • Patient Engagement (Are patients and caregivers on the study team? Is there a plan to share project results back to the patient community?)
How to Help Guide Future CARRA Research

Contact Vincent Del Gaizo ([email protected]), CARRA’s Director of Partnerships and Patient Engagement. Vincent will connect with you to discuss the grant program. No experience is necessary. Vincent will provide a short, informal training so you can review a project in the future.

CARRA Workgroups

CARRA is organized into disease specific research committees. In each committee there are workgroups where members plan and discuss research. CARRA workgroups meet virtually at various times throughout the year. Patients and families have the opportunity to join workgroups and bring the patient voice to the discussion.

What Workgroups are Available

Examples of workgroups include the JIA Inactive Disease Workgroup, the sJIA Workgroup, the Lupus Genetics Workgroup, the JDM Calcinosis Workgroup, and the Transition to Adult Care Workgroup. Find out more about CARRA’s research committees and workgroups.

Which Groups Should I Join?

Patients and families join workgroups that are interesting to them. Some families bring lived experience to the discussion and some bring professional experience.

Who to Contact

Contact Vincent Del Gaizo ([email protected]) if you are interested in learning more or joining a CARRA workgroup.

CARRA Annual Scientific Meeting

Each year, CARRA hosts a working meeting to plan and discuss research. The CARRA meeting is the largest annual gathering for pediatric rheumatology in North America.

Learn More

Young adult patients and caregivers invited to the meeting have the opportunity to:

  • Work side by side with CARRA members and other patient families.
  • Share your thoughts about what is important to you in managing pediatric rheumatic diseases.
  • Help with existing research projects
  • Help in the planning of new research projects
Who to Contact

Contact Vincent Del Gaizo, Director of Partnerships and Patient Engagement ([email protected]) if you are interested in learning more or attending the CARRA Annual Scientific Meeting.

Learn About CARRA’s Registry and Biorepository Projects

The CARRA Registry was designed to learn about long term safety of medications and long term outcomes. The goal is that the right medication is given to the right child at the right time. Find out more about the Registry and Biorepository, including learning about current studies.

“As a parent, it is important for us to contribute to and enhance the review process. We are the most qualified people to decide if the projects are important to us and if we can participate. Access to research results for the patients/public are also important factors for families to consider when reviewing projects”.

– Jamie Diianni, parent

For questions and opportunities to get involved in CARRA’s research activities, please contact Vincent Del Gaizo, CARRA Director of Partnerships and Patient Engagement at [email protected].