Join patients, care providers, researchers and physicians in PARTNERS, and help improve the lives of children with rheumatic diseases and their families.
What is PARTNERS?
PARTNERS formally links childhood arthritis and lupus patients, family members, the CARRA network, the Lupus Foundation of America, the Arthritis Foundation and a quality improvement network called PR-COIN. Our vision is to improve the lives of children with rheumatic diseases through research that matters to YOU. PARTNERS is a patient-powered research network funded by PCORI.
- CARRA: The Childhood Arthritis and Rheumatology Research Alliance was created to ease research aimed at finding the cause and cure for childhood rheumatic diseases. Nearly every pediatric rheumatologist in North America is a member of CARRA. CARRA's vision is to have every patient participate in research in some way and PARTNERS helps bring this vision to reality.
- PR-COIN: The Pediatric Rheumatology Care and Outcomes Improvement Network is a network of rheumatologists, nurses, therapists, social workers and support staff at rheumatology centers who in partnership with families are all working together to transform how care is delivered to children with JIA. The aim of PR-COIN is to develop and evaluate specific disease management strategies to improve the care of children with JIA and to determine how best to incorporate these strategies into clinical practice. PR-COIN is creating a sustainable network that uses a registry database to measure performance, learn more about the health status of JIA patients as well as to inform future improvement projects.
- Lupus Foundation of America: Founded in 1977, the Lupus Foundation of America, Inc., is devoted to solving the mystery of Lupus, one of the world's cruelest, most unpredictable, and devasting diseases, while giving caring support to those who suffer from its brutal impact. Our mission is to improve the quality of life for all people affected by lupus through programs of research, education, support and advocacy.
This Prezi has been created by engaged family members of patients and provides a brief, interactive explanation of the importance of the continuing involvement of people with rheumatic diseases and their families in the process of research. It also contains an overview of the PARTNERS Patient Powered Research Network (PPRN) and affiliated organizations.
You will have the power to influence the research conducted and supported by PARTNERS.
Join PARTNERS and make a difference. EVERYONE with a connection to juvenile idiopathic arthritis (JIA) is encouraged to join – those with JIA, parents or guardians of children with JIA, family members or friends, healthcare providers or researchers. It’s okay if you don’t know anything about research. We need people from a variety of communities. No matter what kind of work you do, your education or background, we need YOU.
When you sign up, you may be asked to do the following:
- Take online surveys -- about your experiences, medications used to treat JIA and other vital topics.
- Serve on a PARTNERS committee – focusing on a particular project or need, for example.
- Contribute to a project -- based on your skills, experiences and interests.
- Provide ideas for research topics -- to help us decide which research studies to support.
- Participate in a research study – such as an online or in-person focus group.
Registration is Easy! Just click here!
This is to ensure you understand your participation is related to research. Some of the questions in the PARTNERS registration are about your connection to JIA and living with the disease. These are considered protected health information (PHI). This type of information helps us connect you with PARTNERS activities you are interested in. We encourage you to review the Transparency Policy￼ which describes how the data you provide is used and protected. which describes how the data you provide is used and protected.
If you have questions, review the PARTNERS Frequently Asked Questions or contact PARTNERS at firstname.lastname@example.org.