ileak Registry
Advancing care starts with understanding. We are thrilled to share the launch of ileak registry℠, an international patient registry for spinal CSF leak sponsored by the Spinal CSF Leak Foundation and hosted by the National Organization for Rare Disorders (NORD®) through its IAMRARE® platform. The registry provides a secure and standardized way to collect patient-entered data over time related to diagnosis, symptoms, treatment, quality of life, and outcomes. By collecting real-world data directly from patients, the registry aims to help address critical knowledge gaps and support innovation and future research in the field.
For spinal CSF leak, gaps in awareness, delayed diagnosis, and limited data have long made it difficult to fully understand how this condition presents, how care is accessed, and what outcomes look like over time.
The Spinal CSF Leak Foundation’s ileak registry℠ was created to help address those gaps by collecting patient-reported data directly from people living with 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℠ is an international, patient-driven research registry that allows people with spinal CSF leak to share their experiences directly with researchers. ileak registry℠ is open to individuals with either suspected or confirmed spinal CSF leak.