Apr 25, 2018

The National Hemophilia Foundation (NHF) has announced the launch of a new research project focusing on the benefits of genetic counseling using telemedicine (telegenetics) for carriers of hemophilia. Genetic counselors are professionals who have specialized education in medical genetics and counseling to guide and support patients seeking more information about their genetic health.

The study, which is currently enrolling, aims to demonstrate the value of telegenetic counseling in delivering sensitive genotyping results to patients, compared to current standard of delivery of results, which varies dramatically across the United States (US).

The study is open to women who have undergone genotyping through the My Life, Our Future (MLOF) initiative and who have not received genetic counseling about their test results. Participants will be randomly sorted into two groups. One group will receive free, confidential, telegenetic counseling by a licensed HTC genetic counselor shortly after enrollment. The other group will receive their genotyping results the standard way they would outside the study.  After they have completed the six-month survey they will be offered the same telegenetic counseling.

“We believe that women who receive specialized genetic counseling will benefit from education about what being a carrier of hemophilia means for their overall health,” said Michelle Witkop, DNP, FNP-BC, Head of Research at NHF and the study’s principal investigator. “We want to see how telegenetic counseling affects their personal plan of care, including seeking the advice of a health care provider.”

The participants will receive genetic counseling using telemedicine, a secure video chat between the participant and the genetic counselor using either a smartphone or a computer with a HIPAA compliant link. All information generated by the genetic counseling session will remain confidential. Health behavior will be assessed via secure online surveys.

Eligible people will be enrolled on a first-come, first serve basis. Participation will be limited by available resources and timeframe.