Preferences for Receiving Results from a Rare Disease Clinical Trial: A Survey of Subjects with Friedreich’s Ataxia and their Parents-Reference-Cited by-同舟云学术

Preferences for Receiving Results from a Rare Disease Clinical Trial: A Survey of Subjects with Friedreich’s Ataxia and their Parents

Published:2017-08-23 Issue:5 Volume:31 Page:329-337
ISSN:1178-2595
Container-title:Pharmaceutical Medicine
language:en
Short-container-title:Pharm Med

Author:

Amelot Vincent^ORCID,Bungener Catherine,Guilmin-Crepon Sophie,Schroedt Julien,Alberti Corinne,Husson Isabelle

Funder

Friedreich's Ataxia French Association (AFAF)

Assistance Publique - Hôpitaux de Paris

Publisher

Springer Science and Business Media LLC

Subject

Pharmacology (medical),Pharmacology

Link

http://link.springer.com/article/10.1007/s40290-017-0201-y/fulltext.html

Reference38 articles.

1. Dinnett EM, Mungall MM, Kent JA, Ronald ES, McIntyre KE, Anderson E, et al. Unblinding of trial participants to their treatment allocation: lessons from the Prospective Study of Pravastatin in the Elderly at Risk (PROSPER). Clin Trials. 2005;2:254–9.

2. Miller FA, Christensen R, Giacomini M, Robert JS. Duty to disclose what? Querying the putative obligation to return research results to participants. J Med Ethics. 2008;34:210–3.

3. MacNeil SD, Fernandez CV. Attitudes of research ethics board chairs towards disclosure of research results to participants: results of a national survey. J Med Ethics. 2007;33:549–53.

4. Ministère de la Santé et des Solidarités. Code de la santé publique. L1122-1. Sect. Chapitre II: Information de la personne qui se prête à une recherche impliquant la personne humaine et recueil de son consentement May 16, 2016. https://www.legifrance.gouv.fr/affichCode.do;jsessionid=3930D09EE1D275059E733436A8A59A14.tpdila22v_1?idSectionTA=LEGISCTA000025457449&cidTexte=LEGITEXT000006072665&dateTexte=20170329 . Accessed 24 Apr 2017.

5. Multi-Regional Clinical Trials of Harvard and Brigham and Women’s Hospital. MRCT return of results Toolkit. 2015. Report No.: Version 2.0. http://mrctcenter.org/wp-content/uploads/2015/11/2015-10-02-MRCT-ROR-Toolkit-Version-2.0-2.pdf . Accessed 11 June 2017.