The Chiari1000 was launched in September 2015 as a groundbreaking research project whose aim was to use the web to create a consistent dataset on a large, diverse population of at least 1000 Chiari patients

Chiari1000 participants answer self-report surveys, complete validated, neuropsychological scales, and share their medical imaging (MRIs, CTs, etc.). In addition, some participants provide biological samples and participate in additional studies.

Thanks to the Chiari community, the Chiari1000 has become a tremendous research asset.  The purpose of this website is to provide a summary of the Chiari1000 data to the Chiari community who essentially created it.

While every effort has been made to provide accurate data, the data summaries below may contain errors and should not be used for research purposes.  If you are a professional researcher or clinician and are interested in accessing the Chiari1000 data for a research project, please email [email protected]

As of 9-17-19:

 • 1728 people have completed the self-report questionnaires 

• 1360 people have completed the self-report and the validated scales

 • 721 people have completed the self-report, the scales, and shared their images 

• CCRC researchers have published 10 journal papers using Chiari1000 data

Chiari1000 Data Summaries


The images shared through the Chiari1000 have already been used to publish 7 Journal Papers.
CCRC researchers are still actively working on the Chiari1000 images; as such, we can not provide a full overview of the morphometric data at this time.
However, the table below is a representative sample of the work being done using the image set.

Selected Morphometric Measures