The EuRRECa project as a model for data access and governance policies for rare disease registries that collect clinical outcomes

Ali, S. R. et al. (2020) The EuRRECa project as a model for data access and governance policies for rare disease registries that collect clinical outcomes. International Journal of Environmental Research and Public Health, 17(23), 8743. (doi: 10.3390/ijerph17238743) (PMID:33255540) (PMCID:PMC7727867)

Abstract

No abstract available.

• Item Type: Articles
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Bryce, Dr Jillian and Ali, Dr Salma and Smythe, Mr Chris and Ahmed, Professor Syed Faisal
• Authors: Ali, S. R., Bryce, J., Tan, L. E., Hiort, O., Pereira, A. M., van den Akker, E. L.T., Appelman-Dijkstra, N. M., Bertherat, J., Cools, M., Dekkers, O. M., Kodra, Y., Persani, L., Smyth, A., Smythe, C., Taruscio, D., and Ahmed, S. F.
• College/School: College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
• Journal Name: International Journal of Environmental Research and Public Health
• Publisher: MDPI
• ISSN: 1661-7827
• ISSN (Online): 1660-4601
• Published Online: 25 November 2020
• Copyright Holders: Copyright © 2020 The Authors
• First Published: First published in International Journal of Environmental Research and Public Health 17(23):8743
• Publisher Policy: Reproduced under a Creative Commons licence