The study is open: Participants are now recruiting investigators-Reference-Cited by-同舟云学术

The study is open: Participants are now recruiting investigators

Published:2017-01-04 Issue:371 Volume:9 Page:
ISSN:1946-6234
Container-title:Science Translational Medicine
language:en
Short-container-title:Sci. Transl. Med.

Author:

Terry Sharon F.¹

Affiliation:

1. Sharon F. Terry, President and CEO of Genetic Alliance, Washington, DC 20008, USA, and serves as a member of the PCORnet leadership and the Cohort Advisory Panel of the U.S. Precision Medicine Initiative.

Abstract

Two U.S. national initiatives have stated emphatically that people will be partners, not patients, in clinical research.

Publisher

American Association for the Advancement of Science (AAAS)

Subject

General Medicine

Reference6 articles.

1. President Barack Obama’s speech on the Precision Medicine Initiative; www.whitehouse.gov/photos-and-video/video/2015/01/30/president-obama-speaks-precision-medicine-initiative [accessed 30 January 2016].

2. Obama's Precision Medicine Initiative

3. Patient-powered research networks: building capacity for conducting patient-centered clinical outcomes research

4. This year marks my 22nd year of being involved in what is traditionally known as patient advocacy more recently termed “citizen science.” In 1994 after a diagnostic odyssey of several years my children were diagnosed with a rare genetic disease pseudoxanthoma elasticum. With my husband we did what was then novel and is now somewhat common for nonscientist parents to do: We created a registry and biobank cloned the gene created a diagnostic test and co-led clinical trials.

5. Learning Genetics

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