Frequently Asked Questions
The ileak registry℠
FAQ for the ileak registry℠
Thank you for your interest in the ileak registry℠. Please see below some frequently asked questions. If you have additional questions that are not listed, please read the full FAQ document or contact us at registry@spinalcsfleak.org!
What is a Research Study Sponsor?
A Research Study Sponsor is an individual, company, institution, or organization. They are responsible for choosing appropriately trained and experienced researchers to conduct the study. They are also responsible for the initiation and management of a research study. Additionally, the sponsor is responsible for the costs associated with conducting a registry study. They ensure that the study is conducted in a reputable, ethical manner and upholds regulations as they apply to the study. The sponsor of this registry is the Spinal CSF Leak Foundation.
Who is the Spinal CSF Leak Foundation?
The Spinal CSF Leak Foundation is a US-based 501(c)(3) non-profit founded in 2014 by patients with spinal CSF leak / intracranial hypotension. Its mission is to reduce the suffering of those experiencing spinal CSF leak. The Foundation is 100% patient-led, governed by a board composed of individuals living with spinal CSF leak.
You can learn more about the Spinal CSF Leak Foundation at https://spinalcsfleak.org.
Who can join the study?
This study is open to anyone who has a confirmed or suspected diagnosis of spinal CSF leak and meets the study inclusion criteria for participation.
Does my diagnosis need to be confirmed to join the study?
No, the diagnosis does not need to be confirmed by a physician to participate in the study.
Can I pause and return later to complete the surveys?
Yes, you can hit “save” on your data and return to your answers later before submitting your answers to the survey. Once a survey has been submitted, those answers cannot be modified, but they can be supplemented when you update your information approximately every six months.
How long will it take to complete?
Initial participation in the registry is estimated to take approximately 1-3 hours to enter information and complete, depending on the Participant’s experience and/or time that it took to diagnose and treat their spinal CSF leak. Participants may pause at any time and later resume their progress using their secure login credentials. As noted above, and in order to capture updates over time, participants will be asked to return to the registry approximately every six months to complete follow-up surveys. These follow-up entries typically require about 30 minutes – 1 hour to enter updated information.
Will I receive updates on registry findings or results?
By contributing to the ileak registry℠, participants help advance research, support future studies, and improve understanding and care for individuals affected by spinal CSF leak. While individual updates on registry findings are not automatically provided, the Spinal CSF Leak Foundation will periodically share information about registry progress, research collaborations, and data-driven insights.
Participants are encouraged to sign up for the Spinal CSF Leak Foundation’s newsletter or follow its official social media channels to stay informed. Participants also have access to their own data at any time through the participant dashboard and may view charts and graphs based on combined, de-identified registry data.