Precise^™ Treatment Registry

Frequently asked questions

• What is the purpose of the Precise Treatment Registry?
  To advance cancer care by providing research opportunities and fostering partnerships with clinicians.
• What type of information will be in the Registry?

  Initially, the registry will be pre-loaded with a de-identified data on thousands of patients results, along with clinical components from the test requisition form (TRF). Pre-loading data allows for immediate exploration for clinicians who have been fully onboarded.

  De-identified clinical data and results (some state restrictions apply) from tests ordered will be uploaded, including Precise Tumor, MyChoice CDx, MyRisk or BRACAnalysis CDx^®, and Prolaris^®.

• Will other non-Myriad data be included in the Registry?

  Yes, over time several different sources will be available including, but not limited to outcomes data and The Cancer Genome Atlas (TCGA). TCGA is a joint effort of the National Cancer Institute and the National Human Genome Research Institute and contains publicly available molecular data on over 20,000 primary cancer and matched normal samples from 33 cancer types available for review through the Precise Treatment Registry.

  Please note work using TCGA should be cited using guidance from https://www.cancer.gov/about-nci/organization/ccg/research/structural-genomics/tcga

• What types of analysis can be done with the data in the Registry?

  Once access is granted to the research portal, users will be able to carry out queries and analysis that will help inform and foster research opportunities.

  Some examples include:

  • Explore treatment and medical decision making across cohorts
  • Expand somatic-germline interactions and associations
  • Evaluate outcomes (in process) from different treatments based on ancestry, demographics, lifestyle, etc.
  • Compare individual data (in process) to aggregate group datasets
• After I have gained access to the Registry how do I move forward with a research idea for publication?
  After completion of the End User License Agreement and the Myriad team member has demonstrated how to enter the Registry, you can access specific datasets or to conduct analyses across datasets. If you are interested in downloading or conducting research, you will need to complete a Concept Form outlining your proposed research idea. The Concept Form will be evaluated by Myriad and if approved, an IRB will be requested. Final approval of all research activity is required by Myriad.
• Can data be downloaded or exported?
  Data can be exported or downloaded after a Concept Form project has been approved. It is your responsibility to refrain from actions that would violate any agreements.
• Where do I go for help with the Registry?

  Please contact DNAnexus ([email protected]) for any questions (24/7, 365 days) and they will triage appropriately, including operational and functional help (i.e., forget password/username, not getting access to fields, cohort browser, etc.). The Myriad registry portal website also contains a Resources section with a User Guide.

  The Regional Medical Specialist who will be orientating you to the registry is available for support on navigating the registry, filtering, and working with the cohort browser. They can triage to other experts if your questions require it.