Health Care : Current Reviews

Massachusetts General Hospital, USA

Publications

• Short Communication   
  Unique patient identification as a necessary condition for clinical research in rare diseases
  Author(s): Alex Sherman
  
  Clinical and research information resides in multiple data repositories, registries, bio, and image banks, EHRs, ?omics collections, clinical trials datasets, etc. Some of these resources contain information about the same individuals, but matching the records or tissues is extremely challenging, as each data collection may utilize its own identifiers. Broad utilization of patient registries and platforms and applications for patient?reported outcomes (PRO), and a recent indication from the FDA on its willingness to accept PRO along with other RWD (natural histories, EHR records, etc.), require innovative approaches on identification, curation, harmonization, integration, and sharing such information in a secure de?identified environment. Data distribution of de?identified information with potential secondary requests for more information from the same patients tha.. View more»
  

  Abstract PDF