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Longitudinal natural history studies based on real-world data in rare diseases: Opportunity and a novel approach.

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Bibliographic Details
Title: Longitudinal natural history studies based on real-world data in rare diseases: Opportunity and a novel approach.
Authors: Adang, Laura Ann1 (AUTHOR) adangl@chop.edu, Sevagamoorthy, Anjana1 (AUTHOR), Sherbini, Omar1 (AUTHOR), Fraser, Jamie L.2,3 (AUTHOR), Bonkowsky, Joshua L.4,5 (AUTHOR), Gavazzi, Francesco1 (AUTHOR), D'Aiello, Russel1 (AUTHOR), Modesti, Nicholson B.1 (AUTHOR), Yu, Emily1 (AUTHOR), Mutua, Sylvia1 (AUTHOR), Kotes, Emma1 (AUTHOR), Shults, Justine6,7 (AUTHOR), Vincent, Ariel8 (AUTHOR), Emrick, Lisa T.9,10 (AUTHOR), Keller, Stephanie11 (AUTHOR), Van Haren, Keith P.12 (AUTHOR), Woidill, Sarah1 (AUTHOR), Barcelos, Isabella1 (AUTHOR), Pizzino, Amy1 (AUTHOR), Schmidt, Johanna L.1 (AUTHOR)
Source: Molecular Genetics & Metabolism. May2024, Vol. 142 Issue 1, pN.PAG-N.PAG. 1p.
Database: Academic Search Ultimate
Description
ISSN:10967192
DOI:10.1016/j.ymgme.2024.108453