Challenges, facilitators and barriers to the adoption and use of a web-based national IRD registry: lessons learned from the IRD-PT registry

Marques, JP; Vaz-Pereira, S; Costa, J; Marta, A; Henriques, J; Silva, R

Marques, JP (通讯作者),Ctr Hosp & Univ Coimbra CHUC, Ctr Responsabil Integrado Oftalmol CRIO, Ophthalmol Unit, P-3000075 Coimbra, Portugal.

ORPHANET JOURNAL OF RARE DISEASES, 2022; 17 (1):

Abstract

Rare disease registries increase research accessibility for patients, while providing clinicians/investigators with a coherent data ecosystem necessar......

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