In 2000, a small group of pediatric rheumatologists realized they had a shared vision: to create an investigator-led collaborative research network with an elected leadership. The founding members of CARRA recognized that meaningful research in rare pediatric rheumatic diseases must be done through collaboration among many pediatric rheumatologists and many centers, large and small. Emulating the models of other successful pediatric research networks, our members strive to change the culture of research so that all patients with a rheumatic disease will be able to participate and contribute to finding a cure.
Our founding members quickly realized that one of the best ways to achieve its primary focus was to begin a registry project. The CARRA Registry was founded as a means to collect information about how childhood-onset rheumatic diseases are treated and how they affect patients. The information is provided by the medical team and by patients and their families. Patients’ names and other identifying information are kept separate from all of the other information.
The registry was created to monitor the long term safety of the medications used to treat pediatric rheumatic diseases. A recent survey of parents listed understanding long term safety of medications as their #1 priority. But the registry does so much more: It also collects large amounts of information on thousands of patients, their treatments, side effects and quality of life, so you will be able to make more informed decisions about your/your child’s health. The goal is to have all the information you need to choose the safest treatment for your desired outcome.
Researchers use the information collected to answer important questions about how safe medications are, how well medications work, and how well patients do over time. Combining the Registry information with biosamples, such as blood tests or genetic tests, can be a very powerful tool for researchers. For example, they may be able to predict how well patients will do with a particular medication or even find a cure for the disease.
CARRA members work together to capitalize on opportunities, actively develop a structure and a scientific agenda, and collaborate with potential funding sources to create a research alliance that benefits our patients.
CARRA believes that patients who are affected by pediatric rheumatic diseases and their families should help us lead research efforts in these areas. That means being part of the research team. Team members help define the questions that need to be answered, design research studies and protocols, develop patient/public facing materials, and translate medical articles to make them understandable to patients and families.
CARRA wants remain true to our founding principles and achieve our ever-expanding goals. With that in mind, we strive to support studies that can help build an evidence base for effective care for children with rheumatic disease. We want to give priority to investigator-initiated protocols, and assign priority for research development on the basis of scientific merit and impact. We encourage our research sites and members to commit to enrolling patients in research studies. We want to institute transparent and clearly articulated operating principles, including organizational structure, governance, protocol selection, protocol development, and publication mechanisms.
Internally, we elect alliance leadership in a democratic fashion. We ensure high standards of performance, accountability, and ethics for members. Developing and providing resources to centers and investigators to maximize participation in research studies is of great importance. We also encourage and support inclusion of epidemiologic and translational research in association with clinical studies, and embrace data sharing and dissemination of results as a core principle.
Looking towards the future, we are committed to developing protocols for all rheumatic diseases of childhood, and work to respond rapidly to funding opportunities. Lastly, we seek to foster relationships with members of other organizations who support CARRA’s mission and vision.
Since CARRA’s inception, we have published numerous scientific articles, funded various grants, and launched major studies. We also host an annual scientific meeting. Our goal is to enroll 10,000 patients in our registry – and we have achieved that goal!