Invitae Corp. announced the launch of the Invitae Patient Insights Network, a permission-based, patient-centered network designed to make it easy for patients to share health experiences, contribute de-identified clinical data, and maintain their privacy while being connected to the latest research, treatment, and disease education opportunities.
The Invitae Patient Insights Network is a patient-directed approach to the traditional patient registry.
The Invitae PIN enables patients with specific health conditions to share information, be connected to clinical trial and research opportunities, and contribute de-identified data across a wide variety of health conditions.
The information patients share can be used by clinicians, researchers, and therapeutic developers to locate screened cohorts for possible participation in research studies. Through the Invitae PIN, patients direct and control how their de-identified information is shared and can opt in or opt out at any time.
In addition, Invitae will continue to contribute de-identified data to public research databases such as ClinVar, a freely available genetic information database from the National Center for Biotechnology Information.
Patients who enroll in the Invitae PIN are guided through a series of questions to gather their diagnostic experience, genetic information, treatment experience and other relevant health and family history information. Based on their responses, patients gain access to a dashboard that allows them to explore de-identified information contributed by others with the same diagnosis, for example viewing the treatment experiences of other breast cancer patients. Using the dashboard, patients can manage their preferences to share data or receive notifications about clinical trials and research opportunities that match their profile.
The Invitae PIN will open enrollment to people with a personal or family history of cancer or who have had genetic testing for cancer predisposition. Enrollment for patients with conditions in additional clinical areas, such as cardiology and neurology, will open throughout 2017.
