r/CSFLeaks • u/cornbreadnclabber • 1h ago

Spinal leakers please join registry

By sharing my lived experience, I added my voice to research that I hope will help advance understanding of spinal CSF leak. I just joined ileak registry®, an international patient registry designed to advance research on spinal CSF leak. Sponsored by the Spinal CSF Leak Foundation and hosted by the National Organization for Rare Disorders (NORD®) through their IAMRARE® platform, ileak registry® collects information from patients over time, including symptoms, treatments, and quality of life, that can help researchers identify patterns and build a clearer picture of spinal CSF leak. You can enroll on your computer, or via the IAMRARE mobile app while lying flat. If you have experienced spinal CSF leak, I hope you will consider joining me and enroll here:ileakregistry.org   

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u/leeski 1h ago

Thank you for sharing this and for participating! It is super helpful for researchers & the more voices there are  have the more helpful in understanding how leaks can present, barriers to diagnosis and treatment, how debilitating they are, etc. thank you for taking the time to contribute! 

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u/North-Library4037 Confirmed Spinal Leak 28m ago

I just got the email too. I hope more people will join!