Bruna dos Santos Vieira

radboud university nijmegen

H指数:8

被引数:243

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Framework for Multistakeholder Patient Registries in the Field of Rare Diseases

NEUROLOGY

IF8.5

2024-09-241

OAAI

Schoenmakers, Daphne H.; van den Berg, Sibren; Timmers, Lonneke; Adang, Laura A.; Baumer, Tobias; Bosch, Annet; van de Casteele, Marc; Datema, Mareen R.; Dekker, Hanka; Donnelly, Conan; Driessens, Mariette H. E.; Graessner, Holm; Greger, Valerie; Haddad, Tala; Hoglinger, Gunter U.; van den Hout, Hannerieke; Jonker, Carla; Langeveld, Mirjam; Lambert, Laurie J.; Neacy, Eileen; Nieuwland, Marc; Klockgether, Thomas; van der Knaap, Marjo S.; Papadopoulou, Andri; Plueschke, Kelly; van Rijn, Sanne; Rosenberg, Noa; Saunier-Vivar, Elise F.; Vieira, Bruna dos Santos; Hollak, Carla E. M.; Goettsch, Wim G.; Wolf, Nicole I.

Towards FAIRification of sensitive and fragmented rare disease patient data: challenges and solutions in European reference network registries

走向敏感和零散的罕见疾病患者数据的fairiification: 欧洲参考网络注册中心的挑战和解决方案

ORPHANET JOURNAL OF RARE DISEASES

IF3.5

2022-12-1414

OAAI

Domain-Specific Common Data Elements for Rare Disease Registration: Conceptual Approach of a European Joint Initiative Toward Semantic Interoperability in Rare Disease Research

JMIR MEDICAL INFORMATICS

IF3.8

2022-05-2012

OAAI

De-novo FAIRification via an Electronic Data Capture system by automated transformation of filled electronic Case Report Forms into machine-readable data