Does the registry speak your language? A case study of the Global Angelman Syndrome Registry

Global disease registries are critical to capturing common patient related information on rare illnesses, allowing patients and their families to provide information about their condition in a safe, accessible, and engaging manner that enables researchers to undertake critical research aimed at impr...

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Detalles Bibliográficos
Autores principales: Tones, Megan, Zeps, Nikolajs, Wyborn, Yvette, Smith, Adam, Barrero, Roberto A., Heussler, Helen, Cross, Meagan, McGree, James, Bellgard, Matthew
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2023
Materias:
Letter to the Editor
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10588126/
https://www.ncbi.nlm.nih.gov/pubmed/37858180
http://dx.doi.org/10.1186/s13023-023-02904-1

Internet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10588126/
https://www.ncbi.nlm.nih.gov/pubmed/37858180
http://dx.doi.org/10.1186/s13023-023-02904-1

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