Parent Action Committee

PMSF Parent Action Committee for the Patient Centered Outcome Research Institute

PMSF is committed to patient-centered healthcare.  Our families are invited to be involved  in the development of the patient registry.  Through PCORI(Patient Centered Outcome Research Institute) contract, PMSF has established a Parent Action Committee(PAC) that is a PMS parent-centered committee consisting of rotating parent advisors that represent the diverse PMS patient community (patient: age, location, and severity of disease). The Committee is responsible for:

  • Providing input for modification of questions and answer choices of the PMSIR surveys
  • Providing feedback on PMSIR content and usability
  • Identifying new registry topics (emerging issues) that are raised by families on social media discussion groups
  • Assisting in developing processes and protocols for assisting families in gathering electronic medical records and genetic test reports
  • Providing technical assistance and support for families in processing concepts for integration in the PMS_DN
  • Providing conceptual feedback on the policies and procedures researchers must abide by to use PMSIR and PMS_DN data for research.

The PAC members are involved in Registry Data Dissemination approvals, serving as family member reviewers.  Another activity of the PAC is to suggest webinar topics that are of interest to PMS families.  Click below to view the the Family Webinar Series.

For more information, please contact Jackie Jacobs, PMSF Family Engagement Specialist:

Photo of Jackie

Jackie Jacobs

Family Engagement Specialist

Jackie serves as the PMSF Family Engagement Specialist and PAC chairperson.  In these roles, she assists families in understanding how they can influence and participate in research.  

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