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More than 500 Geisinger patients have learned from the MyCode Community Health Initiative that they carry a genetic change putting them at higher risk for certain diseases. This creates a lot of questions for patients and health care researchers.

  • How many of these patients go on to develop the diseases?
  • What kind of follow-up treatment do they receive?
  • How does the patient and clinician understanding of genetic risk and their response to it change over time?
  • Why didn’t regular, routine medical care uncover these medical risks? Or did they?
  • Have immediate family members been tested?

As more and more families are notified of results from MyCode, these are some of the new questions that are coming up.

In order to try to answer them, Geisinger is creating a patient registry to track and follow patients with MyCode results.

The registry will include both the MyCode patient-participants and their immediate family members who are found to have genetic conditions by Geisinger.

The registry will be useful in following patients after a result. It will also be useful for important research activities, for example, determining how common some of the genetic illnesses are in our population.

An estimated 18,000 Geisinger patients and family members could ultimately be included in this registry. Any patient who objects to inclusion in the registry will be able to fully opt-out.

Those MyCode patients who had their results returned before the creation of the registry will be able to opt-in.

The registry will be private and confidential and given the same protections as all other private health information at Geisinger.

Patients with questions can send an e-mail to or call (toll free) 844-798-1687.

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