NEW YORK – CureDuchenne is incorporating data from patient health records into its biobank, the not-for-profit said Tuesday.
CureDuchenne has partnered with health-tech company PicnicHealth for the expansion. Through the partnership, patients with Duchenne or Becker muscular dystrophy who participate in the CureDuchenne Link biobank and opt to bring their medical records into the program will be given access to PicnicHealth's patient portal to corral their medical records into a web-based application.
The biobank, which already collects biosamples and patient-reported data, is intended as a data resource for researchers studying Duchenne and Becker muscular dystrophy treatments.
"We will now be able to match the biosamples, genomic data, and patient-reported outcomes data we collect with real-world data to more fully understand the journey of those in the muscular dystrophy community," said CureDuchenne Founder and CEO Debra Miller in a statement.
Participation in CureDuchenne Link, including the component with PicnicHealth, is free.