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Prostate Cancer Genetic Risk, Experience, and Support Study (PROGRESS)

Prostate Cancer Genetic Risk, Experience, and Support Study (PROGRESS)

Surveys, Registries, Interviews

Study Contact Information:

For additional information, contact Laura Gross, Study Coordinator by email or call: 215-503-5285

Prostate Cancer Genetic Risk, Experience, and Support Study (PROGRESS)

About the Study

Prostate Cancer Genetic Risk, Experience, and Support Study (PROGRESS) is a national, patient-driven registry for any male who has undergone or is currently undergoing genetic testing for cancer. 

Genetic testing for cancer is rapidly expanding. Genetic results may provide options for treatment, management or screening for cancer. The goal of the registry is to collect information on men’s experience with the genetic counseling and genetic testing process to help inform the development of resources to help men and their families with this process.

Visit www.progressregistry.com to enroll. 

Study Details

The PROGRESS Registry will collect the following information from 500 men who participate:

  • cancer features (such as Gleason score, , age at diagnosis)
  • Family history
  • Comfort with decision-making for genetic testing
  • How genetic counseling or genetic education was delivered before deciding on genetic testing
  • Understanding of genetic test results
  • Knowledge of cancer genetics
  • Satisfaction with the genetic evaluation process
  • Diet and  physical activity to help develop ways to promote health and wellness

What the Study Entails

  • After reading and signing the informed consent electronically, you will complete a survey online.
  • The survey will take about 45 minutes to complete.
  • You will be emailed a follow-up questionnaire once a year for 5 years.
  • You will also receive newsletters twice a year regarding the current state of genetic testing and precision therapy for cancer, new advances in genetically informed treatment or management of PCA, and how genetics can impact families.
  • You will have opportunities to participate in yearly webinars currently under development by the PROGRESS Registry study team. These webinars are voluntary.
  • You will receive $50 for completing the first survey.

Study Locations

The following are participating institutions:

  • Philadelphia, PA
    • Sidney Kimmel Cancer Center at Thomas Jefferson University (Lead Site): Veda Giri, MD
  • Baltimore, Maryland
    • Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University: Channing Paller, MD
  • New York, NY
    • New York University Langone Health: Stacy Loeb, MSc, PhD (hon)
  • Chapel Hill, NC
    • Lineberger Comprehensive Cancer Center at the University of North Carolina Chapel Hill: Young Whang, MD
  • Portland, OR
    • OHSU Knight Cancer Institute:  Tom Beer, MD
This Study is Open To:

Any male who has had genetic testing for cancer can enroll in the study. You do not need a cancer diagnosis.

This Study is Not Open To: