Recent initiatives to increase patient and stakeholder engagement have broadened perspectives of CARRA investigators, including molding and changing critical aspects of studies and research workgroups. Parents and patients make up an increasing presence at the CARRA annual meeting, vocally participating in workgroup activities and serving on study teams. Patient study team members for STOP-JIA are helping guide study design and operations, developing patient facing materials, and leading a stakeholder advisory panel.
In addition, CARRA is part of the PARTNERS (Patients, Advocates and Rheumatology Teams Network for Research and Service) Consortium funded by PCORI as a patient-powered research network that is part of PCORnet, the National Patient-Centered Clinical Research Network. One of CARRA’s goals for the future is to embed stakeholder engagement into all CARRA research activities.
CARRA became a 501c3 tax exempt nonprofit organization in late 2014. A Board of Directors was created along with administrative infrastructure for CARRA Inc., which includes an executive director, research operations director and other personnel to work with Steering Committee leadership to operationalize and move CARRA’s mission forward. Becoming a legal organization allows CARRA to negotiate and execute contracts directly with pharmaceutical companies, vendors and the data coordinating center (DCRI).
Another critical factor in CARRA’s recent growth has been the 2015 expansion of the longstanding relationship with the Arthritis Foundation, which has provided increased funding and in-kind operational support, allowing for long-term strategic planning and development of new programs. Examples of the new programs include a small grant program to help fund collaborative early stage projects emerging from the workgroups, modest salary support for steering committee members, a pediatric resident scholarship program at the annual meeting, a CARRA Registry internship program for early career investigators, the addition of data collection for several diseases to the registry (SLE, JDM, localized scleroderma) and a CARRA early investigator program, to name a few examples.
Future Evolution & Challenges
As CARRA thrives as a research organization and continues to grow larger and more complex, major challenges include maintaining its organizational transparency and democratic governance structure, improving member and stakeholder engagement and satisfaction, finding innovative methods of communicating with all members and the public, and ensuring leadership succession.
As a network of academic clinicians and researchers from many institutions and organizations with different levels of existing research support, interests and skills, as well as widely divergent levels of research experience, inherent challenges exist in improving research efficiency and increasing the capacity and diversity of the CARRA research portfolio. CARRA, working with DCRI, is invested in streamlining research through the use of Master Contracts, reliant IRB mechanisms (IRBrely), standardized e-consenting, more extensive use of e-PROs, a standardized data dictionary across studies and electronically facilitated data sharing.
