The Spinal CSF Leak Foundation today announced the launch of the ileak registry℠, an international patient registry designed to help advance research and improve understanding of spinal cerebrospinal fluid (CSF) leak and/or intracranial hypotension.
Sponsored by the Spinal CSF Leak Foundation and hosted by the National Organization for Rare Disorders (NORD®) through their IAMRARE® platform, the ileak registry℠ provides a secure and standardized framework for longitudinal data collection. Patients, or their authorized representatives, can contribute information related to diagnosis, symptoms, treatment, quality of life, and outcomes over time.
As a patient-centered research initiative, the ileak registry℠ enables real-world data generation driven by the spinal CSF leak community, for the spinal CSF leak community. The Spinal CSF Leak Foundation hopes the ileak registry℠ leads to advances in understanding, improvements in clinical care, and additional collaboration in the field.
Spinal CSF leak remains underdiagnosed and many individuals experience misdiagnosis, delays in diagnosis, and/or have limited access to specialized care. The ileak registry℠ was developed to help address these challenges by collecting patient-entered data intended to support and drive future research, clarify condition patterns, and identify areas of unmet clinical needs.
Participation is open globally to individuals with confirmed or suspected spinal CSF leak, as well as legally authorized representatives, caregivers, or guardians completing surveys on a patient’s behalf. Data is collected through the IAMRARE’s secure web-based platform. De-identified data may be shared with qualified researchers and institutions in accordance with registry governance policies, ethical review requirements, and applicable privacy and research standards.
“Many people living with spinal CSF leak begin their journey searching for answers when symptoms are unexplained and appropriate care is difficult to access,” said Jodi Ettenberg, President of the Board of Directors of the Spinal CSF Leak Foundation. “For many patients and caregivers, the Foundation is an early source of reliable information and connection. The ileak registry℠ extends that work by translating lived experience into data that we hope will support both the patient and physician communities while helping move the field toward earlier diagnosis and care.”
“The launch of the ileak registry℠ reflects years of dedicated work by patients and physicians on our registry team and registry advisory board and the Foundation as a whole,” said Olivia Chelko, Executive Director of the Spinal CSF Leak Foundation. “This milestone reflects what is possible when patient voices and scientific rigor come together.”
“This new study has tremendous promise to build strong partnerships and engage the patient community to address current knowledge gaps for spinal CSF leak. NORD is thrilled to be a part of driving research and innovation-based outcomes for all the families in this community,” said Janine Lewis, Director of Research Operations, NORD.
For more information or to participate in this exciting new international registry, the ileak registry℠, please visit: ileakregistry.org.
For physicians: for marketing packets with posters, postcards, and flyers to distribute to patients and/or hang in your office, please email us at registry@spinalcsfleak.org
We have answered some frequently asked questions below, as well, for patients to familiarize themselves with this project. We are thrilled to share that the IAMRARE platform now has a mobile app, so you can fill in the registry surveys at your own pace, even while lying flat.