A Staff Perspective on the SRNA Registry

The SRNA Registry is more than just numbers. It is a patient registry designed to learn more about the natural history, treatments, and outcomes of rare neuroimmune disorders. We constantly examine its wealth of data to understand important aspects of living with a rare neuroimmune disorder, such as diagnosis, symptom management, care pathways, and more. The registry guides us as an organization and drives groundbreaking research efforts. 

Over the past several weeks, we’ve shared why our registry is so crucial to our community members diagnosed with a rare neuroimmune disorder and the future of rare neuroimmune disorder research. Today, we’re sharing a new perspective. 

Read what some of our staff members had to say when asked how the SRNA Registry impacts their work every day.

“The SRNA Registry is an important tool for understanding the experiences of those diagnosed with rare neuroimmune disorders. By collecting information on individuals’ diagnosis, acute treatments, ongoing symptoms, and more, we can learn more about these disorders and the most urgent topics that should be researched. Working on the Registry the last five years has helped me to understand the problems that the rare neuroimmune community face, but it has also given me hope for the future of research to improve quality of life and even find a cure.” 

Krissy Dilger, Research and Program Manager

“The registry started as part of the NIH’s Global Rare Diseases Patient Registry Program, and when that ended, we shifted to having SRNA continue the registry on our own. The registry asks important questions about the diagnostic process, what the first inflammatory attack was like, if respondents have had relapses, and current symptoms. It allows us to look at all the disorders together and also see differences in onset, diagnosis, symptoms, and treatments for each disorder. Thank you for sharing your experiences with us!”

GG deFiebre, PhD, MPH, Director of Research and Programs 

“A registry is a powerful tool to learn from our community about the natural history of the disorders, learn about treatments and evaluate outcomes. It is a tool that will help us develop better treatment guidelines and facilitate more research to better understand these rare neuroimmune disorders.”

Chitra Krishnan, Executive Director

Want to learn more? Watch inspiring videos from Curtis Meadows and Dr. Benjamin Greenberg. Curtis is our ambassador for the SRNA Registry Fundraising Campaign. As someone with Transverse Myelitis, Curtis shares his perspective on why the registry matters to community members like him. Dr. Greenberg is an internationally recognized clinician and scientist specializing in these disorders. He shares why the registry is so important to his work and the future of research.