The Value of your data to researchers
You help provide information needed to learn about Multiple Sclerosis and the progression of disease, along with valuable clues to new approaches to diagnosis, management and treatment.
Click HERE to see the research papers published using NARCOMS data.
Reasons to Participate
There are many benefits to the MS community at large and your personally sharing your data and becoming a member of the NARCOMS registry.
What Your Participation Means
What's in it for You?
How Do We Protect Your Identity?
Request registration materials and survey
You are notified of clinical trials and other studies for which you may be eligible to participate.
We keep you updated on findings that might be of current or future interest through our quarterly magazine NARCOMS NOW
You are contributing to the knowledge base that can lead to improved treatments and quality of life for you and future people with MS.
There is no cost to your participation. NARCOMS is a project of the Consortium of Multiple Sclerosis Centers. Additional support over our 20-plus years of data collection has been provided by grants and in-kind services from United Spinal Association, Paralyzed Veterans Association (PVA), and the National Multiple Sclerosis Society, researchers and industry collaborators, as well as the following pharmaceutical companies: Berlex, Biogen, Serono, and Teva Neuroscience.
Our site is secure, and any data that is distributed for research purposes is coded with an ID number rather than any specific identifiers. Any researcher who wants to use NARCOMS data has have IRB approval for their research and is only provided de-identified data, meaning the data cannot be linked back to your name and other personal information.
In addition, we use REDCap to manage our data entry and enrollment and update surveys. Our REDCap database is hosted on Unix servers on our divisions secure computer network. User access is provided via an external secure web server. All web communication between the user web browser and the web server is SSL encrypted. The database server itself is currently not encrypted via any encryption at rest schema. Further protections are provided via strict Unix permission configurations on the servers themselves. Access to the data username/password keys is restricted in accordance with our University’s HIPAA policy.