Donors' Generosity Helps Make Cerebral Palsy Registry a Reality at NorthwesternHelp Support the CPRRFor more information on how to support the CPRR, please contact Jeff Nearhoof at 312-503-3088. |
Created in collaboration with the Rehabilitation Institute of Chicago and the University of Chicago, and run primarily through the Department of Physical Therapy and Human Movement Sciences (NUPTHMS), and specifically the lab of Jules Dewald, DPT, PhD, the Cerebral Palsy Research Registry (CPRR) collects the basic medical history, clinical measurements, and contact information of individuals with cerebral palsy who are interested in participating in studies. Now four years old, the registry lists 325 participants from 20 different states who range in age from one to 47 (though anyone up to 90 years old can join). Researchers from any institution who have an approved study can request a search of the database for appropriate subjects and then have those individuals notified about the study. As the United States does not have a national cerebral palsy (CP) registry, the CPRR at Northwestern University was made possible only though private philanthropy. The Staubitz Charitable Trust, Art and Linda Staubitz, and their daughter Melissa Siebert have donated to the CPRR since 2007. Ms. Siebert’s daughter Caroline has cerebral palsy. “Following my daughter’s diagnosis, I was surprised at how little federally funded research was going on in regards to cerebral palsy’s causes, potential treatments, and a cure,” Ms. Siebert said. “The registry gives researchers access to data for private studies and, hopefully, will help increase federal funding for cerebral palsy research.” Read the full online exclusive article in Ward Rounds for more information on the CPRR. | 
