The Transverse Myelitis Association has joined The NIH/NCATS GRDR® Program (Global Rare Diseases Patient Registry Data Repository) to create a new patient registry. The purpose of this registry is to help advance research about rare neuro-immune disorders, collaborate with researchers from around the world and identify participants for clinical trials. Our de-identified data integration into GRDR will allow query by investigators to accelerate research across many rare diseases, that eventually may lead to the development of novel diagnostics and therapeutics for patient benefit. More information about the GRDR program can be found here: http://www.ncats.nih.gov/grdr.
Many of our members have shared information about their diagnosis, treatment and outcomes over the years. The information you shared continues to help us guide our programs and research. THANK YOU!
The TMA registry has been designed to learn more about the natural history of rare neuro-immune disorders, treatments and outcomes using standardized tools.
- Individuals diagnosed with
- Acute Disseminated Encephalomyelitis
- Neuromyelitis Optica Spectrum Disorder
- Optic Neuritis
- Transverse Myelitis, including Acute Flaccid Myelitis
- Consent to participate must be provided by an eligible adult participant or a legal guardian if the participant is under the age of 18 or is an adult who is unable to provide consent for him/herself.
- Parents or a legally-authorized representative can also enroll on behalf of patients who are deceased. When a legal guardian/representative is completing The TMA Registry, an additional signature is required for participant assent, which is required if an individual is 7 years of age or older and is cognitively able to provide assent.
This is a voluntary registry.
The participant may choose someone to help submit their registry information if needed.
If you or a family member are diagnosed with a rare neuro-immune disorder, please become a member of The TMA to participate in The TMA Registry.
TMA members will receive email updates on research progress and clinical trial opportunities as they become available.
For more information and questions about The TMA Registry, please contact The TMA’s Associate Director of Research and Education, GG deFiebre, at firstname.lastname@example.org.