In 1989, eight-year-old Gina Yocum attended Camp MASH in Wisconsin for the first time. She had so much fun at JA Camp that she went back the next summer – and then 28 more after that. For the first 10 years, Gina attended camp as a camper; this June will be her 20th year as a staff member.
The Arthritis Foundation is funding a new program to help support the Childhood Arthritis and Rheumatology Research Alliance (CARRA) and the CARRA Registry (registry). Eight sites were selected to receive funding to support the salary of a dedicated registry research coordinator for one year. Until now, some sites have been short-handed for this important research position.
Researchers collect information through studies on many pediatric patients with rheumatic diseases over time and store it in the registry. Research coordinators play a critical role in making sure research studies run smoothly. Those supported by this program will:
Every family whose child receives a diagnosis of a rheumatic disease (such as juvenile idiopathic arthritis (JIA), lupus, dermatomyositis and scleroderma) wants the best treatment and care. The doctors who treat your child also want to provide the best treatment and care for their patients. Over the past 20 years, new discoveries and medicines have greatly improved the lives of children with rheumatic diseases. Many new treatment choices are good, but how can we know which medication will work the best for each child? What if we can learn the answer to this question by simply collecting information on how usual care and treatment work for a lot of children with the same disease?