GUIDE – A New Initiative For a National Bio Repository

Posted by E. David Crawford, MD | Nov 2021

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 Nov 2024. 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.

ABOUT THE AUTHOR

E. David Crawford, MD

Researcher-physician E. David Crawford, MD, Jack A. Vickers Director of Prostate Research and Professor of Urology at the University of California, San Diego, has devoted his career in medicine to educating the public about men's health issues and finding effective techniques and procedures to address prostate cancer, the most common malignancy affecting men in the United States.

About The Author

E. David Crawford, MD

Researcher-physician E. David Crawford, MD, Jack A. Vickers Director of Prostate Research and Professor of Urology at the University of California, San Diego, has devoted his career in medicine to educating the public about men's health issues and finding effective techniques and procedures to address prostate cancer, the most common malignancy affecting men in the United States. Dr. Crawford received his medical degree from the University of Cincinnati and his postgraduate training included an internship and residency in urology at the Good Samaritan Hospital in Cincinnati. He subsequently completed a genitourinary cancer fellowship at the University of California Medical Center in Los Angeles. Dr. Crawford is an internationally recognized expert in benign prostate hypertrophy, urologic cancers, and in particular, prostate cancer. He has conducted research in the treatment of advanced bladder cancer, metastatic adenocarcinoma of the prostate, hormone-refractory prostate cancer, and other areas of urological infections and malignancies. He has authored or coauthored over 810 scientific articles, has published seven textbooks, authored over 60 book chapters, and provided more than 2,200 educational talks for patients and physicians. In an effort to raise public awareness about prostate health, Crawford in 1989 founded the Prostate Conditions Education Council (PCEC). The non-profit organization is comprised of a consortium of leading physicians, health educators, scientists, and men's health advocates. PCEC's advocacy for free or low-cost prostate screening has affected the lives of millions of American men. He currently chairs the PCEC. Crawford is an active member of many national and international organizations, including the American Society of Clinical Oncology, the American Urological Association (AUA), and the American Association for the Advancement of Science. Within the AUA, he has been a member of the Committee to Study Urologic Research Funding and the prostate cancer clinical trials subcommittee. Crawford served on the board of governors, the scientific advisory board of the Southwest Oncology Group, and was chairman of the Genitourinary Cancer Committee for 27 years. This group is the largest clinical trials group in the world. Crawford's involvement in the national prostate cancer arena has been widely recognized. He has received many honors and awards, including the CAP Cure Annual Award for Scientific Presentation in 1999 In 1997, he was presented with a 'Freddie Award" at the AMA International Health and Medical Film Competition for the program, ITV: The Cutting Edge Medical Report (Prostate Cancer: Understanding, Diagnosing, and Defeating), which Crawford hosted with special guest, retired General Norman Schwarzkopf. Crawford again won a prestigious 'Freddie Award" 5 years ago... He is a member of Best Doctors of America and was named Healthcare Provider of the Year in the Denver Metro area by the Denver Business Journal. He has been recognized as one of the Best Doctors of America for the past two decades and is recognized as one of the top 20 urologists in the country, for men, by Men’s Health Magazine. In 2018 he received the honor of being named the Distinguished Alumnus of the Year from the University of Cincinnati School of Medicine. In May of 2019, he received the Presidential citation from the American Urological Association recognizing for his “tireless role in genitourinary cancer research that has benefited countless urologic cancer patients.” He accepted the position of Editor in Chief of Grand Rounds in Urology in June of 2019. In 2021, he was the recipient of the Merle Stringer, M.D. annual award for excellence in medicine by the Florida State Medical Association.

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