Designing, Maintaining, and Utilizing Rare Disease Patient Registries - a scoping review

OSF Preprints (OSF Preprints) 2026 Preprint

Authors: Andrea Tricco, Jennifer Daly-Cyr, Laura Rosella, Maureen Smith, Catherine Stratton, Jessie McGowan, Menelaos Konstantinidis
Cited by: 0

Fields of Study & Subjects

Electronic Health Records Systems Genomics and Rare Diseases Research Data Management Practices

Publication details

Journal / source
OSF Preprints (OSF Preprints)
Publication date
12 January 2026
Document type
Preprint