Spinal CSF Leak Foundation is proud to announce that we are partnering with NORD® to create a registry for spinal CSF leak patients.
The National Organization for Rare Disorders is an independent nonprofit that built its IAMRARE® online registry platform as part of its mission to help identify and treat all 7,000 rare diseases. Spinal CSF Leak Foundation is a member of NORD, and these two organizations will work together to understand the challenges and identify opportunities to advance research for this rare disease patient population.
We’ll be working closely with NORD as we build the registry using the IAMRARE® platform, and we anticipate that it will be ready to launch next spring.
Why is a patient registry important?
Here are just some of the crucial ways a patient registry can help us understand more about spontaneous intracranial hypotension and spinal CSF leak:
Understanding disease prevalence: While small studies have estimated the annual incidence of spontaneous intracranial hypotension to be 4 to 5 per 100,000, our understanding of disease prevalence remains unknown. The prevalence of spinal CSF leaks resulting from medical procedures is also unclear. A patient registry can help to determine the actual number of affected individuals, providing a more comprehensive understanding of the disease burden.
Facilitating research and advancements: By collecting data on patients with spinal CSF leak, a 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 therapeutic interventions, and potential breakthroughs.
Enabling collaboration and networking: Registries foster collaboration between healthcare providers, researchers, and patient communities. They create networks for sharing knowledge, expertise, and best practices, leading to improved care coordination, increased awareness, and advocacy efforts.
Empowering patients and families: A patient registry allows individuals and families to actively contribute to research and the understanding of spinal CSF leak. By participating in the registry, patients and families become advocates for their own health, gain access to support networks, and contribute to shaping research priorities and advancements.
Just the beginning
Our patient registry with NORD’s IAMRARE® online platform will be critical for promoting research, improving diagnosis and care, fostering collaboration, and empowering patients and families. It will also help address the unique challenges faced by individuals with spinal CSF leak and contribute to better outcomes and quality of life. And it will be an important part of the collaborative research network we hope to launch next year.