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Published in 2019 at "Molecular Genetics and Metabolism"
DOI: 10.1016/j.ymgme.2018.12.188
Abstract: The International Niemann-Pick Disease Registry (INPDR) is a single, rare disease-specific registry collating global Niemann-Pick Disease data. Created by professionals and patients for worldwide use, it collects clinical and patient reported data with separate datasets…
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Keywords:
regulatory requirements;
registry;
challenges regulatory;
human research ... See more keywords