Creating Collaborative Treatment Plans for Patients with Pediatric Rheumatic Diseases
Every family whose child receives a diagnosis of a rheumatic disease (like juvenile idiopathic arthritis (JIA), lupus, dermatomyositis, vasculitis or scleroderma) wants the best treatment and outcomes for their kid. And while over the past 20 years, new medicinal discoveries have improved the lives of children with rheumatic diseases, it’s still incredibly difficult to determine which treatment is best for your child based on their disease. Traditional large research studies (e.g., randomized controlled trials) are costly and slow. These studies also encounter challenges, like finding enough patients with the same disorder, when looking for people with rare diseases (like most pediatric rheumatic diseases)
To help families better navigate treatment options, the Childhood Arthritis & Rheumatology Research Alliance (CARRA) in partnership with the Arthritis Foundation is collecting information on children with arthritis and other rheumatic diseases, and using it to help doctors, patients and their families determine which treatments work best in which situations. To accomplish this, CARRA has developed a new way of studying how treatments work called Consensus Treatment Plans (CTPs) that reduce the complexity of treatments into a small number of agreed upon standard protocols. This allows current treatment approaches to be more easily studied and results compared between patients seen in different centers.
Under this process, when a patient is diagnosed with a disease, the doctor, patient, and family discuss the available CTPs and select the one they feel will work best for the disease and the patient. Then, each patient is followed regularly over time and standardized information is collected about the patient’s disease activity, and how they and their family are feeling.
To analyze and house the information, CARRA created the CARRA Registry - a secure, reliable, and uniform way to collect patient data from many doctors and patients, helping doctors learn which CTP works best. Patients sign up at their doctor’s office and agree to add their identity-protected data to the registry and answer questionnaires about how they feel.
When enough patients on the standardized CTP treatments have added their data, doctors can compare their results and determine which treatments work best and are safest for particular diseases and types of patients. In the meantime, while sufficient data is being collected, standardized CTPs guide all doctors to give the best-known care to patients, which increases overall patient success. To learn more, visit http://www.kidsgetarthritistoo.org/research/carra-partnership.php.
Guy Eakin, Ph.D., is senior vice president of scientific strategy at the Arthritis Foundation, which provides funding to CARRA and is a partner on this project.