Overview of existing initiatives to develop and improve access and data sharing in rare disease registries and biobanks worldwide-Reference-Cited by-同舟云学术

Overview of existing initiatives to develop and improve access and data sharing in rare disease registries and biobanks worldwide

Published:2016-05-26 Issue:7 Volume:4 Page:729-739
ISSN:2167-8707
Container-title:Expert Opinion on Orphan Drugs
language:en
Short-container-title:Expert Opinion on Orphan Drugs

Author:

López Estrella¹,Thompson Rachel²,Gainotti Sabina³,Wang Chiuhui Mary⁴,Rubinstein Yaffa⁵,Taruscio Domenica³,Monaco Lucia⁴,Lochmüller Hanns²,Alonso Verónica⁶,Posada de la Paz Manuel⁶

Affiliation:

1. Institute of Rare Diseases Research (IIER), Institute of Health Carlos III (ISCIII), Madrid, Spain

2. John Walton Muscular Dystrophy Research Centre, Institute of Genetic Medicine, Newcastle University, Newcastle, UK

3. National Center for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy

4. Fondazione Telethon, Milan, Italy

5. Office of Rare Diseases Research (ORDR), National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH), Bethesda, MD, USA

6. Institute of Rare Diseases Research (IIER), SpainRDR & CIBERER, Institute of Health Carlos III (ISCIII), Madrid, Spain

Publisher

Informa UK Limited

Subject

Pharmacology (medical),Health Policy,Pharmacology, Toxicology and Pharmaceutics (miscellaneous)

Link

https://www.tandfonline.com/doi/pdf/10.1080/21678707.2016.1188002

Reference70 articles.

1. Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee of the regions on rare diseases: Europe’s challenges. Brussels: European Commission; 11.11.2008 COM(2008) 679 final.

2. US Public Law 107-280. 107th congress. An act to amend the public health service act to establish an office of rare diseases at the National Institutes of Health, and for other purposes; 2002 Nov 6.

3. The need for worldwide policy and action plans for rare diseases

4. ICORD website [cited 2016 Feb 18]. Available from: http://www.icord.se.

5. GENERATING HEALTH TECHNOLOGY ASSESSMENT EVIDENCE FOR RARE DISEASES

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