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(1 - 4 of 4)
Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues
Gainotti, S.; Mascalzoni, D.; Bros-Facer, V.; Petrini, C.; Floridia, G.; Roos, M.; ... ; Taruscio, D. 2018
Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues
Article / Letter to editor
open access
Recommendations for Improving the Quality of Rare Disease Registries
Kodra, Y.; Weinbach, J.; Posada-de-la-Paz, M.; Coi, A.; Lemonnier, S.L.; Enckevort, D. van; ... ; Taruscio, D. 2018
Recommendations for Improving the Quality of Rare Disease Registries
Article / Letter to editor
open access
The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers
Gainotti, S.; Torreri, P.; Wang, C.M.; Reihs, R.; Mueller, H.; Heslop, E.; ... ; Taruscio, D. 2018
The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers
Article / Letter to editor
open access
The TREAT-NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia
Bladen, C.L.; Rafferty, K.; Straub, V.; Monges, S.; Moresco, A.; Dawkins, H.; ... ; Lochmuller, H. 2013
The TREAT-NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia
Article / Letter to editor
metadata only