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

Rare disease registries increase research accessibility for patients, while providing clinicians/investigators with a coherent data ecosystem necessary to boost research and patient care. The IRD-PT registry is a national, web-based, interoperable registry for inherited retinal degenerations (IRDs)...

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Detalles Bibliográficos
Autores principales: Marques, João Pedro, Vaz-Pereira, Sara, Costa, José, Marta, Ana, Henriques, José, Silva, Rufino
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2022
Materias:
Letter to the Editor
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9419370/
https://www.ncbi.nlm.nih.gov/pubmed/36028864
http://dx.doi.org/10.1186/s13023-022-02489-1

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9419370/
https://www.ncbi.nlm.nih.gov/pubmed/36028864
http://dx.doi.org/10.1186/s13023-022-02489-1

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