Michael Kamerick Sr Director of Health Systems Solutions Recombinant Systems Diana Gumas Director of Clinical and Clinical Research IT 1 Goals for Todays Session 2 ID: 650871
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Clinical Research Data & System Strategy Session
Michael Kamerick, Sr. Director of Health Systems Solutions, Recombinant SystemsDiana Gumas, Director of Clinical and Clinical Research IT
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Goals for Today’s Session
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Understand our current state with regards to clinical research enterprise systems
Learn what other institutions have done to leverage their clinical research enterprise systems
Develop a strategy for clinical research enterprise system data contents and interfacesSlide3
Current State
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What are others doing?
UMass – cohort discovery + finding samples in biobank based on clinical phenotypeCity of Hope – integrate i2b2 with tissue repository
Cincinnati Children’s – Liver transplant registry, cohort discovery
Thomas Jefferson – i2b2 linked with tumor registry &
biospecimen
repositoryHarvard / Mass General – use i2b2 for EHR driven genomic research in numerous disease categoriesHarvard/Partners - rheumatoid arthritis phenotypes using diagnosis codes & NLP of documents
Insights from Michael Kamerick…
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High Level Points from Today’s Discussion
Establish a “Data Trust” and associate governance, to be led by Dr. Peter Greene with help from RecombinantLimit data in caTissue
to specimen metadata and limited clinical annotation. TBD as to what limits are reasonable
To make #2 work, need to be able to spin off as needed protocol-specific data marts for clinical data that researchers are entitled to.
Need for permissions registry
Use of i2b2 to find tissues associated with a clinical phenotype
(FUTURE) Use of i2b2 to find genotype associated with clinical phenotype
Data repository should be in FISMA-controlled environment
Labeling data as research data if in the clinical record
Need to more easily access image data from multiple sources
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