The study is open: Participants are now recruiting investigators

Science Translational Medicine

Volumn 9, Issue 371, 2017, Pages

  Terry, Sharon F ^a  

^a GENETIC ALLIANCE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CLINICAL RESEARCH; HUMAN; PATIENT CARE; PATIENT PARTICIPATION; PERSONALIZED MEDICINE; PERSONNEL MANAGEMENT; REVIEW; UNITED STATES; MEDICAL RESEARCH; METHODOLOGY; NATIONAL HEALTH ORGANIZATION; ORGANIZATION AND MANAGEMENT; PATIENT ADVOCACY; PATIENT SELECTION; PERSONNEL; TRANSLATIONAL RESEARCH;

BIOMEDICAL RESEARCH; HUMANS; NATIONAL INSTITUTES OF HEALTH (U.S.); PATIENT ADVOCACY; PATIENT PARTICIPATION; PATIENT SELECTION; PATIENT-CENTERED CARE; RESEARCH DESIGN; RESEARCH PERSONNEL; TRANSLATIONAL MEDICAL RESEARCH; UNITED STATES;

EID: 85010635722     PISSN: 19466234     EISSN: 19466242     Source Type: Journal    
DOI: 10.1126/scitranslmed.aaf1001     Document Type: Review

References (6)

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-medicineinitiative [accessed 30 January 2016].
2. S. F. Terry, Obama's Precision Medicine Initiative. Genet. Test. Mol. Biomarkers 19, 113-114 (2015).
3. PCORnet PPRN Consortium, S. E. Daugherty, S. Wahba, R. Fleurence, Patient-powered research networks: Building capacity for conducting patient-centered clinical outcomes research. J. Am. Med. Inform. Assoc. 21, 583-586 (2014).
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. S. F. Terry, Learning genetics. Health Affairs 22, 166-171 (2003).
6. Paul Batalden, MD; www.dartmouth.edu/~cecs/hcild/hcild.html.