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Longitudinal Study of Neurodegenerative Disorders

The NDRD is committed to improving long-term outcomes for children with neurodegenerative diseases; therefore, we ask every patient to consider participating in our longitudinal study of rare neurodegenerative diseases. Because these diseases are so rare, it is important that we use all the information available to improve treatments for these diseases.

At the patient’s clinical appointment, families have the opportunity to discuss this research and their possible participation with the clinician. This research study uses only the data that is already collected during the patient’s evaluation and treatment. No additional tests or examinations are needed. Personal information is kept confidential. No one outside of the NDRD research and clinical team will have access to any information that can be used to identify the patient.

The information gathered during this study will be used by the NDRD to better understand the successes and failures of current treatments. Other researchers and companies will also use this information to guide the development of new treatments.

If your child has not or cannot undergo clinical examinations by the NDRD team and you would still like to participate, please consider joining our International Rare Disease Registry.