E. David Crawford, MD, and Matthew O. Leavitt, MD, presented “GUIDE – A New Initiative For a National Bio Repository” during the 31st International Prostate Cancer Update in July 2021 in Snowbird, Utah.
How to cite: Crawford, E. David and Leavitt, Matthew O. “GUIDE – A New Initiative For a National Bio Repository.” July 2021. Accessed Dec 2023. https://grandroundsinurology.com/guide-a-new-initiative-for-a-national-bio-repository/
GUIDE – A New Initiative For a National Bio Repository
E. David Crawford, MD, Editor-in-Chief of Grand Rounds in Urology and Professor of Urology at the University of California, San Diego, and Matthew O. Leavitt, MD, Chief Executive Officer at PathNet, Inc., present the GUIDE initiative to disrupt current data and bio-specimen collection and streamline the exchange of clinical data. Dr. Crawford offers a vision for integrated data-sharing and then introduces Dr. Leavitt, who describes the process. In order to create personalized treatment plans, Dr. Leavitt reasons that individual patients’ data must be shared between institutions and contends that our current disconnected health systems present a variety of institutional, economic, and data-based barriers to this goal. He then discusses the DDx Foundation, a public non-profit which builds and supports clinical data exchanges that is governed by physicians and supported by allied industry partners. Their aim is to create a network of clinic and hospital bio-repositories that will lead to standardization of patient-informed consent, specimen handling, and data curation. Instead of owning data or specimens, DDx Foundation contractually handles the specimen-data transactions with third parties, and the value of this data is then passed back to the clinical contributors. Dr. Leavitt then walks through the process from consent to data exchange. He describes how utilizing edge computing to capture and analyze patient data at the clinical site instead of in a centralized cloud server creates a more cost-effective method of testing. Once data is collected, it is distributed to a regional tissue data hub automatically and the information is anonymized for data and specimen marketplace and de-identified for future care of the patient. Finally, through regional bio-repositories, data is then shared in a central trust where it can be accessed by researchers across the country for retrospective analysis or clinical trials. Dr. Leavitt concludes by describing the benefits for researchers, clinics, data contributors, and patients.
About The 31st Annual International Prostate Cancer Update:
The International Prostate Cancer Update (IPCU), founded in 1990, is a multi-day CME conference focused on prostate cancer treatment updates with expert, international faculty. It is led by expert physicians and is designed for urologists, medical oncologists, radiation oncologists, and other healthcare professionals involved in the diagnosis and treatment of prostate cancer. Drs. Crawford and Leavitt delivered this educational activity during the 31st iteration of the meeting in July 2021 in Snowbird, Utah.