HFI Pre-Launch Patient Registry
The Hepatitis Foundation International (HFI) requests your participation in a very important preliminary survey. In collaboration with a team from the Genetic Alliance, the Hepatitis Foundation International has been approved by the Patient-Centered Outcomes Research Institute to develop and expand a health data network that will be part of PCORnet: the National Patient-Centered National Clinical Research Network, Community-Engaged Network for All.
HFI's goal for this new patient registry is to collect self-reported data on a patient's health along the hepatitis health care continuum. HFI's collaboration with Genetic Alliance and 8 other national organizations will test the prospect of recruiting patients from academic medical centers into participant-led models to form a new national resource that will serve to accelerate health research, while ultimately shortening cures for hepatitis and other liver related diseases.
HFI will launch the new patient registry on our website August 2014. We ask that you complete this brief survey which will take no longer than a minute of your time and is comprised of 10 easy questions. Please copy this link for the HFI Patient Registry Survey:
surveymonkey.com/s/S5RVLX6?... in your browser to complete the survey. For additional information about the patient registry, email: Research@hepatitisfoundation.org. Thank you for your participation!