OVERVIEW
Doing Research with PR-COIN
In a learning network, research and clinical improvement work hand in hand towards improving outcomes. PR-COIN encourages researchers to leverage our patient and parent group, as well as our network of Quality Improvement and research trained centers to quickly test research findings in clinics. PR-COIN’s registry of longitudinal patient data can be a resource to explore new treatment strategies, and discover better ways to care for our children.
Where to Start
We encourage you to become more familiar with our registry data to assess if it can help your research study. All our research data sets are de-identified or limited and are encrypted at the time of sharing. All investigators are encouraged to complete a request form to be reviewed by the PR-COIN research committee. To better understand our research review process, and the steps involved in sharing our data, please review our process map.
Our Research Partnership
PR-COIN has developed a partnership with research organizations, including the Childhood Arthritis and Rheumatology Research Alliance (CARRA), through several Patient-Centered Outcomes Research Institute (PCORI) awards. Patients, Advocates, and Rheumatology Teams for Research and Service (PARTNERS) is a patient-powered research network originally funded by PCORI, and more recently funded by CARRA, that brings together the Arthritis Foundation (AF), Lupus Foundation of America (LFA),and CureJM, along with CARRA and PR-COIN, to rethink how we engage patients and families in research. PARTNERS is a one-stop shop for investigators interested in engaging patients and families in their research. PARTNERS works with advocacy groups to create a pool of patients and caregivers who have the skills to assist investigators with protocol design, survey and focus group participation, and outreach. If you would like to learn more about PARTNERS, please refer to the Arthritis Foundation’s website. For research involving PR-COIN data, please refer to the forms available under “Where to Start”.
PR-COIN and CARRA are actively working to create opportunities for investigators to explore Implementation Science and Quality Improvement concepts. In the summer of 2020, CARRA plans to release Design and Testing RFAs. Investigators with a research idea can apply for the design grants and flesh out their ideas further using PR-COIN’s expertise in QI. Awardees will work as a cohort and go through a six-month design curriculum with the goal to have an implementation framework and prioritized interventions ready for testing. Those with an existing well-designed idea can apply for the Testing grant and begin testing across 2-3 centers using PR-COIN resources. For more information about the design and testing grants, please refer to CARRA’s website.
PR-COIN and Telemedicine
As the global coronavirus disease 2019 (COVID-19) continues to spread, PR-COIN centers continue to adjust to new ways of providing care to patients with rheumatic conditions via telemedicine and share best practices and lessons learned with each other. As a network, we work closely with advocacy groups to keep our community informed of the many resources available to our families and patients. Please visit the links below to learn more about the latest information regarding COVID-19 and telemedicine.
