Measuring what matters to rare disease patients – reflections on the work by the IRDiRC taskforce on patient-centered outcome measures

Author:

Morel ThomasORCID,Cano Stefan J.

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Genetics (clinical),General Medicine

Reference96 articles.

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2. European Commission Inventory of Union and Member State incentives to support research into, and the development and avalaibility of, orphan medicinal products - state of play 2015: European Commission; 2016.

3. Morel T, Lhoir A, Picavet E, et al. Regulatory watch: the orphan drug pipeline in Europe. Nat Rev Drug Discov. 2016;15(6):376.

4. US Food and Drug Administration (FDA). The Rise in Orphan Drug Designations: Meeting the Growing Demand. FDA Voice, 18/07/2016. http://blogs.fda.gov/fdavoice/index.php/2016/07/the-rise-in-orphan-drug-designations-meeting-the-growing-demand/ . Accessed 01 June 2017.

5. Cortelis Regulatory Intelligence. Clinical trial data seen as inadequate to support approval for Sarepta's DMD treatment. AdComm Bulletin, 2016.

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