About BJCSF Health Registry

The Chiari Clinical Research Consortium (CCRC) was formed in 2022 to pursue a collaborative effort to study Chiari malformation, syringomyelia, and related disorders.

All de-identified study data are housed centrally to help researchers quickly access better information and find answers for struggling families even faster.

Building a multi-site research effort

In order to ensure broad participation from diverse academic institutions and private practice clinics in the first study of the CCRC, BJCSF and the CCRC Executive Committee completed a full Request for Proposals process in 2022, receiving interest from clinics around the country and the world.

Over 30 sites expressed interest in becoming a part of this multi-centered Chiari and syringomyelia research effort, particularly following the recent study closure of a similar Consortium effort.

Who runs this registry?

This registry is organized by The Bobby Jones Chiari & Syringomyelia Foundation. If you have questions, use the contact information provided in the site navigation.