CARRA Registry

[Guest guest]

Hi,

Duke University Medical Center

Hackensack University Medical Center

University of Kansas Medical Center

Children's Mercy Hospital

Tufts Medical Center

Children's Hospital at Montefiore

Seattle Children's Hospital

The Children's Hospital at Legacy Emanuel

Indiana University

Connecticut Children's Medical Center

Emory University

Mayo Clinic

Vanderbilt Children's Hospital

Stanford University Medical Center

University of Utah Hospitals

As of last week, these 15 hospitals are part of the CARRA registry. CARRA

stands for Childhood Arthritis and Rheumatology Research Alliance. Every week

more hospitals are coming on board. The paperwork for the CARRA registry has to

go before each hospital's IRB (Internal Review Board) before starting. The goal

is to get 20,000 children across the U.S. signed up on the CARRA registry. And

what will this do? It is a short survey which you the parent would fill out

when you visit your pediatric rheumy. It will register your child in a national

registry about their disease, how long they have had it, medications they have

taken, and the level of disease activity. With this information from 20,000

children, then protocols can be formulated, and hopefully a cure will be found

sooner rather than later. Pediatric oncology has used a registry for decades

for the children with cancer, and thus, the survivability has skyrocketed for

many childhood cancers.

So when you go to you pediatric rheumy at these locations, make sure you fill

out the paperwork. And if your hospital is not on the list, badger your

physician about when you will be able to put your child on the CARRA Registry.

The goal of CARRA is to find the cause and the cure for our children.

(n, 21, systemic)