1. A first description of the Colombian national registry for rare diseases;Mateus;BMC Res Notes,2017
2. Workshop on National Registries of RD. 2014. National Institute of Health 2014. Available from: https://www.sciencedirect.com/topics/agricultural-and-biological-sciences/national-institutes-of-health. [Last accessed on 2022 Jan 30].
3. National registries of rare diseases in Europe: An overview of the current situation and experiences;Taruscio;Public Health Genomics,2015
4. Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB);Rubinstein;Contemp Clin Trials,2010
5. A population-based registry as a source of health indicators for rare diseases: The ten-year experience of the Veneto Region's rare diseases registry;Mazzucato;Orphanet J Rare Dis,2014