This Project Grant award from the National Institute of Neurological Disorders and Stroke (NINDS), under the Extramural Research Programs in the Neurosciences and Neurological Disorders (CFDA 93.853) program, will fund a $1,049,035 initiative to harmonize and curate a natural history database for Metachromatic Leukodystrophy (MLD), a rare and fatal neurological disease. The award will support the creation of the "MLD-CORE" database, which will pool longitudinal medical records, diagnostic information, and clinical outcome assessments from 10 major leukodystrophy research centers. This harmonized dataset will inform future MLD clinical trials and potentially serve as a non-concurrent control arm. Additionally, the project will develop a publicly accessible "MLD-LINK" platform to facilitate collaboration among MLD researchers. In the second phase, the researchers will use the MLD-CORE data to create and validate risk stratification tools and novel clinical outcome assessments for presymptomatic MLD monitoring. The award period runs from June 1, 2025 to May 31, 2027.
Mod # | Description | Reason For Modification | Federal Obligation (Click to sort descending) | Date (Click to sort ascending) |
|---|---|---|---|---|
| Not listed | $1.0m | 5/26/25 |