We’re proud to announce that the Spinal CSF Leak Foundation’s international patient registry will be launching this fall!
Growing a registry takes patience, with many steps from initial conception to implementation. And once it’s ready to launch, it will also need patients. Read on to learn more about our upcoming ileak registry and how you can be a part of it!
What is the ileak registry?
The ileak patient registry is a soon-to-be-launched international online registry for individuals with spinal CSF leak or intracranial hypotension.
It will be hosted by the National Organization for Rare Disorders, Inc. (NORD®) on the IAMRARE® platform. NORD is an independent non-profit patient advocacy organization dedicated to individuals with rare diseases and the organizations who serve them.
The registry will be operated by Spinal CSF Leak Foundation and governed by a Registry Advisory Board of physicians, patients, and researchers.
How will the registry help us?
By collecting data on patients with spinal CSF leak, the ileak patient registry creates a valuable resource for researchers and clinicians, who can analyze the data to identify patterns, risk factors, complications, and treatment outcomes, leading to improved understanding, better diagnostic testing and treatments, and potential breakthroughs.
This registry will foster collaboration between healthcare providers, researchers, and patient communities. The networks we form will facilitate the sharing of knowledge, expertise, and best practices, leading to improved care coordination, increased awareness, and advocacy efforts.
Who can participate?
Any person with suspected or confirmed spinal CSF leak that arose following a medical procedure, following trauma, or spontaneously.
A caregiver who is a legally authorized or designated representative may participate on behalf of the person with a suspected or confirmed spinal CSF leak.
Persons of any age, gender, or nationality may participate.
How can someone participate?
Once participants document their voluntary and informed consent, they will be invited to enter their data on a secure online platform. Information will be stored indefinitely or until a participant revokes their consent to participate in the study and requests that their data be removed.
By participating, individuals and families may actively contribute to research and advance the understanding of spinal CSF leak.
Your donations help fund this important research project
Your tax-deductible donation supports our efforts to raise awareness, educate, and fund research and our soon-to-launch international patient registry to help achieve earlier diagnosis, better treatment, and improved outcomes for people with spinal CSF leak.