Chiari malformation (CM) research has struggled to present definitive results due to a low number of subjects and non-uniform data collection methods. Chiari1000 was designed to gather a large, clinically diverse sample of self-reported health, neuropsychological, and imaging data of Chiari patients resulting in a sharable database for research.
Adult and pediatric subjects were recruited through Conquer Chiari’s contact list and social media. Participants accessed the Chiari1000 website (Developed by Matrix 301) via a secure link. Custom data collection forms included demographics, diagnostic history, symptoms, surgical history, related medical conditions, and quality of life, plus 12 standardized psychological scales. Subjects provided head and neck imaging through file sharing websites, postal mail, or via an authorization. Data included in this study were collected 9/2015-1/2019.
As of January 2019, the Chiari1000 database contained 1276 completed surveys and imaging from 702 subjects. Most (91%) were from the US and every state except Hawaii. The sample is predominantly adult (89%) and self-identifies as white (92%) and female (89%). The average age at diagnosis with CM was 31 years for females and 18 years for males. The majority (94%) were diagnosed with CM type I. The top five symptoms for both males and females were headaches, sleeping, neck pain, fatigue, dizziness and balance problems. The top five symptoms for ages 0-11 were shoulder pain, fatigue, sleeping, trouble finding words, and trouble swallowing. The top five symptoms for ages 24-47 were headaches, dizziness, fatigue, neck pain, and trouble sleeping. About half (51%) had decompression surgery. Five publications have resulted from these data on morphometrics, conditions related to CM, pain, cerebellar crowding and education.
Discussion and Conclusions
The Chiari1000 has been a valuable resource to collect self-report health data on CM and relevant medical imaging. Data collection will continue indefinitely.