Projects

Patient and provider information & outcomes

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The eMERGE Network seeks to create a more informed discussion about genomic medicine research through research initiatives focused on education, regulation and consultation, as well as capture and assessment of process and health outcomes. Areas of focus include assessing the barriers and impact of return of genetic results on research participants, patients, family members, and healthcare providers.

Current research areas of interest:

  • Impact of returning unsolicited genetic results on healthcare providers
  • Impact of returning unsolicited genetic results on research participants
  • Familial implications of returning clinical results
  • Regulatory perspectives on sequencing research in clinical practice
  • Assessment of targeted high-impact phenotype outcomes in both adults and pediatrics abstracted from the EHR
  • Investigating economic impact of genomic medicine and sequencing
  • Analysis of implementation outcomes for pharmacogenomics (PGx)

Completed initiatives:

  • MyResults.org  (Lead: John Connolly): An informational resource equipped with knowledgeable material including in-depth drug overviews, explanatory videos, and frequently asked questions about genetic counseling, which can be used to improve critical health decisions.
  • Public Attitudes toward Consent and Data Sharing in Biobank Research (Leads: Saskia Sanderson, Maureen Smith, Ingrid Holm): An experimental survey of 82,328 individuals from 11 healthcare systems in the eMERGE Network that assessed individual willingness to provide broad consent for sharing of biosamples and data. Sanderson SC, et al. Public Attitudes toward Consent and Data Sharing in Biobank Research. Am J Hum Genet. 2017 Mar 2;100(3):414-427

 

 

 

In the News

Here's what's happening with eMerge:

31
AUG

An upcoming scheduled maintenance window is starting Tuesday, September 5th and ending Wednesday, September 6th. During this time, the RD Discover, SD Discover, Subject Locator and Record Counter applications...

25
JUL

The NIH/NHGRI has published IGNITE II RFAs which are linked below for your convenience.

  • Implementing Genomics in Practice (IGNITE) II: Pragmatic Clinical Trials – Clinical Groups...

22
JUN

CMS announced last week it will award up to $30 million in grant funding to clinical specialty societies, clinical professional organizations and independent research organizations to develop quality measures...

10
FEB

eMERGE is excited to share the results of the national multi-site survey it conducted to investigate public attitudes towards consent and data sharing in biobank research recently publish in AJHG.  For...