For Reseachers

The ileak registry℠ collects disease-specific natural history data about individuals with spinal CSF leak / intracranial hypotension, with the goal of improving understanding of spinal CSF leak / intracranial hypotension and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history
• Diagnosis
• Treatment and management of care
• Disease progression and review of current symptoms
• Quality of life

We welcome collaboration and data sharing opportunities! Researchers interested in accessing ileak registry℠ data for approved studies or research projects are encouraged to contact our Registry team at registry@spinalcsfleak.org for more information.

All requests for access to ileak registry℠ data are contingent upon project review and approval by the ileak registry℠ Advisory Board to ensure alignment with the registry’s mission and ethical standards. Please note that fees may apply for data access and analysis. These fees are determined based on a standardized fee scale and the estimated time and resources required to fulfill each request.