Carra Network

The Childhood Arthritis and Rheumatology Research Alliance {CARRA) is a North American organization of more than 425 pediatric rheumatologists, researchers and research coordinators who are working together to to advance the health and quality of life of children living with pediatric rheumatic diseases. It has since rebranded as Carra Group.

Carra is an excellent example of a voluntary regristry provinding improved outcomes and research opportunities for patients with. 

Juvenile idiopathic arthritis (JIA)
Systemic lupus erythematosus (SLE)
Multiple connective tissue disease (MCTD)
Juvenile dermatomyositis (JDM)
Localized scleroderma (LS)
Systemic sclerosis (SS)
Juvenile primary fibromyalgia syndrome (JPFS)

The new CARRA Registry started enrolling patients in the summer of  2015.  Continuation of the CARRA Registry will support data collection on patients with pediatric-onset rheumatic diseases and will form the basis for future CARRA studies. In particular, this observational registry will be used to answer pressing questions about therapeutics used to treat pediatric rheumatic diseases, including safety questions.

We recommend CARRA as an excellent template example for similar projects of it's kind.