Cerebral Palsy Research Network Blog

CPRN Shares Cerebral Palsy Registry Data Model with the National Institutes of Health

The Cerebral Palsy Research Network (CPRN) shared its Common Data Model (CDM) that comprises its forthcoming cerebral palsy registry with the steering committee for National Institutes of Health’s (NIH) effort to standardize cerebral palsy clinical study data.

The American Academy for Cerebral Palsy and Developmental Medicine (AACPDM) and the National Institute of Neurological Disorders and Stroke (NINDS), the leading funder of brain research, have been working together to define Common Data Elements (CDEs) for cerebral palsy. NINDS has supported the creation of CDEs for many brain conditions such as Parkinson’s disease and stroke in the interest of standardizing data collection and sharing to accelerate clinical research. CPRN leveraged existing NINDS CDEs where possible but completed its registry effort in advance of the NINDS CDE process for cerebral palsy.

The sharing of the CPRN CDM represents a tremendous opportunity to leverage the CPRN registry for future cerebral palsy studies. NINDS requires the use of CDEs for a given condition in studies that it funds.

“We want to make sure that all of the elements are considered for the final NINDS CDEs, “ said Dr. Eileen Fowler who co-leads the CDE effort on behalf of the AACPDM. “The steering committee felt that it would be helpful for the working groups to have a copy of the CPRN data elements.” CPRN founder Paul Gross said that its registry definition process included several members of the CDE working groups. CPRN had stated publicly that it planned to share its data model with the CDE effort as soon as it was complete and is happy that it is well received.