Sharon F Terry

Summary

Publications

  1. doi request reprint The haystack is made of needles.
    Sharon F Terry
    Genetic Alliance, Washington, District of Columbia 20008, USA
    Genet Test Mol Biomarkers 17:175-7. 2013
  2. ncbi request reprint Advocacy groups as research organizations: the PXE International example
    Sharon F Terry
    Genetic Alliance, PXE International and Genetic Alliance BioBank, 4301 Connecticut Avenue, NW, Suite 404, Washington, DC 20008, USA
    Nat Rev Genet 8:157-64. 2007
  3. doi request reprint Power to the people: participant ownership of clinical trial data
    Sharon F Terry
    Genetic Alliance, Washington, DC 20008, USA
    Sci Transl Med 3:69cm3. 2011
  4. pmc Community engagement about genetic variation research
    Sharon F Terry
    Genetic Alliance, 4301 Connecticut Avenue, NW Suite 404, Washington, DC 20008, USA
    Popul Health Manag 15:78-89. 2012
  5. doi request reprint The study is open: Participants are now recruiting investigators
    Sharon F Terry
    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
    Sci Transl Med 9:. 2017
  6. pmc Disease advocacy organizations catalyze translational research
    Sharon F Terry
    Genetic Alliance Washington, DC, USA PXE International Washington, DC, USA
    Front Genet 4:101. 2013
  7. doi request reprint An end to the myth: there is no drug development pipeline
    Kristin Baxter
    Genetic Alliance, Washington, DC 20008, USA
    Sci Transl Med 5:171cm1. 2013
  8. ncbi request reprint A consumer perspective on forensic DNA banking
    Sharon F Terry
    Genetic Alliance, USA
    J Law Med Ethics 34:408-14. 2006
  9. doi request reprint Participant-driven matchmaking in the genomic era
    Katherine F Lambertson
    Genetic Alliance, Washington, District of Columbia
    Hum Mutat 36:965-73. 2015
  10. ncbi request reprint Learning genetics
    Sharon F Terry
    Genetic Alliance, USA
    Health Aff (Millwood) 22:166-71. 2003

Collaborators

  • Katherine F Lambertson
  • Kristin Baxter
  • Ellen G Pfendner
  • Matthew Might
  • Stephen A Damiani
  • Robert Shelton
  • Elizabeth Horn
  • Kristi Zonno
  • James O'Leary
  • Patrick F Terry
  • Neely Gal-Edd
  • Gary F Gerard
  • Jouni Uitto

Detail Information

Publications11

  1. doi request reprint The haystack is made of needles.
    Sharon F Terry
    Genetic Alliance, Washington, District of Columbia 20008, USA
    Genet Test Mol Biomarkers 17:175-7. 2013
  2. ncbi request reprint Advocacy groups as research organizations: the PXE International example
    Sharon F Terry
    Genetic Alliance, PXE International and Genetic Alliance BioBank, 4301 Connecticut Avenue, NW, Suite 404, Washington, DC 20008, USA
    Nat Rev Genet 8:157-64. 2007
    ..The model has been followed for other conditions and has led to the establishment of a common infrastructure to enable advocacy groups to initiate, conduct and accelerate research...
  3. doi request reprint Power to the people: participant ownership of clinical trial data
    Sharon F Terry
    Genetic Alliance, Washington, DC 20008, USA
    Sci Transl Med 3:69cm3. 2011
    ..The benefits of participant ownership and sharing of trial data appear to outweigh the risks. Thus, the time has come to crowd-source data for diagnostic and therapy development...
  4. pmc Community engagement about genetic variation research
    Sharon F Terry
    Genetic Alliance, 4301 Connecticut Avenue, NW Suite 404, Washington, DC 20008, USA
    Popul Health Manag 15:78-89. 2012
    ..The PEGV Project represents a model for researchers to engage the general public in policy development about genetic research. There are benefits of such a process beyond the desired genetic research...
  5. doi request reprint The study is open: Participants are now recruiting investigators
    Sharon F Terry
    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
    Sci Transl Med 9:. 2017
    ..Two U.S. national initiatives have stated emphatically that people will be, not patients, but partners in clinical research...
  6. pmc Disease advocacy organizations catalyze translational research
    Sharon F Terry
    Genetic Alliance Washington, DC, USA PXE International Washington, DC, USA
    Front Genet 4:101. 2013
    ..This article will describe the steps that we took, and the ways in which we have scaled these efforts for the larger community...
  7. doi request reprint An end to the myth: there is no drug development pipeline
    Kristin Baxter
    Genetic Alliance, Washington, DC 20008, USA
    Sci Transl Med 5:171cm1. 2013
    ..A new map is presented for creating an open, collaborative, and coordinated system for drug development...
  8. ncbi request reprint A consumer perspective on forensic DNA banking
    Sharon F Terry
    Genetic Alliance, USA
    J Law Med Ethics 34:408-14. 2006
  9. doi request reprint Participant-driven matchmaking in the genomic era
    Katherine F Lambertson
    Genetic Alliance, Washington, District of Columbia
    Hum Mutat 36:965-73. 2015
    ..We provide two examples of participant-led matchmaking, and propose a model for scaling these efforts. ..
  10. ncbi request reprint Learning genetics
    Sharon F Terry
    Genetic Alliance, USA
    Health Aff (Millwood) 22:166-71. 2003
  11. doi request reprint Pseudoxanthoma elasticum: genetic diagnostic markers
    Ellen G Pfendner
    PXE International, Washington, DC, USA
    Expert Opin Med Diagn 2:63-79. 2008
    ..In this review, the mutation spectrum in PXE is summarized and a strategy to optimize mutation detection in this difficult disorder is outlined...