Literature DB >> 22036955

Informed consent process for patient participation in rare disease registries linked to biorepositories.

Yaffa R Rubinstein1, Stephen C Groft, Sara Hull Chandros, Julie Kaneshiro, Barbara Karp, Nicole C Lockhart, Patricia A Marshall, Richard T Moxley, Geraldine B Pollen, Vanessa Rangel Miller, Jack Schwartz.   

Abstract

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Year:  2011        PMID： 22036955      PMCID： PMC4464841          DOI： 10.1016/j.cct.2011.10.004

Source DB:  PubMed          Journal:  Contemp Clin Trials        ISSN： 1551-7144            Impact factor:   2.226


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  1 in total

1.  Creating a global rare disease patient registry linked to a rare diseases biorepository database: Rare Disease-HUB (RD-HUB).

Authors:  Yaffa R Rubinstein; Stephen C Groft; Ronald Bartek; Kyle Brown; Ronald A Christensen; Elaine Collier; Amy Farber; Jennifer Farmer; John H Ferguson; Christopher B Forrest; Nicole C Lockhart; Kate R McCurdy; Helen Moore; Geraldine B Pollen; Rachel Richesson; Vanessa Rangel Miller; Sara Hull; Jim Vaught
Journal:  Contemp Clin Trials       Date:  2010-07-08       Impact factor: 2.226
  1 in total
  4 in total

1.  A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research.

Authors:  Rémy Choquet; Meriem Maaroufi; Albane de Carrara; Claude Messiaen; Emmanuel Luigi; Paul Landais
Journal:  J Am Med Inform Assoc       Date:  2014-07-18       Impact factor: 4.497

2.  Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.

Authors:  Sabina Gainotti; Cathy Turner; Simon Woods; Anna Kole; Pauline McCormack; Hanns Lochmüller; Olaf Riess; Volker Straub; Manuel Posada; Domenica Taruscio; Deborah Mascalzoni
Journal:  Eur J Hum Genet       Date:  2016-02-10       Impact factor: 4.246

Review 3.  Exploring patient and family involvement in the lifecycle of an orphan drug: a scoping review.

Authors:  Andrea Young; Devidas Menon; Jackie Street; Walla Al-Hertani; Tania Stafinski
Journal:  Orphanet J Rare Dis       Date:  2017-12-22       Impact factor: 4.123

4.  Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: "translating" the translational.

Authors:  Pauline McCormack; Simon Woods; Annemieke Aartsma-Rus; Lynn Hagger; Agnes Herczegfalvi; Emma Heslop; Joseph Irwin; Janbernd Kirschner; Patrick Moeschen; Francesco Muntoni; Marie-Christine Ouillade; Jes Rahbek; Christoph Rehmann-Sutter; Francoise Rouault; Thomas Sejersen; Elizabeth Vroom; Volker Straub; Kate Bushby; Alessandra Ferlini
Journal:  PLoS Curr       Date:  2013-01-10
  4 in total

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