Objective:
To provide genotyping and enrollment into the My Life, Our Future research repository for individuals with Hemophilia and potential carriers by offering a community based outreach program.
Methods:
Utilizing the ATHN dataset, potential participants who had not been previously genotyped were identified. In addition, a recruitment letter was prepared and sent to invitees of the local NHF Chapter Annual Dinner. Interested subjects were instructed to contact the genetic counselor, who discussed the project and scheduled them in 15 minute research timeslots. A hospital mobile unit, stocked with medical supplies and a centrifuge, was obtained to provide a site for registration, phlebotomy and processing of specimens. Staff for the event included the following: three staff to consent participants; four staff providing venipunctures, two staff to process specimens, two staff to assist with registration and a driver for the mobile unit. Funding was secured through NHF to support the genotyping day.
Summary:
Fifteen subjects, including 3 males and 12 females, scheduled appointments for the 4-hour recruitment time period. In addition, three subjects were added the day of the project and a waiting list was started for those wishing to enroll at a future event. In total, 17 subjects were enrolled from 9 families. In several cases, family members from different generations enrolled, including an at-risk carrier female, her mother and grandmother. Ages of participants ranged from 4-91. All participants chose to participate in the research repository. One participant’s specimen had to be destroyed due to a mislabelled MLOF ID (an add-on subject). It took approximately 10 hours to prepare for the event including 2 hours of planning related to the mobile unit (5 staff) and 8 hours to develop the recruitment letter, prepare the IRB amendment, mail letters, schedule participants, prepare consent packets, obtain MLOF ID numbers, and arrange phlebotomy kits (4 staff). It took 5 hours and 12 staff to successfully implement the program on the genotyping day. In comparison, we typically process on average two patients per 4 hour comprehensive clinics held two times per month, with 2 staff involved with other concurrent job assignments.
Conclusions:
The outreach program is an effective way to recruit individuals for genotyping and participation in the MLOF research repository. Participants were excited to participate and inquired about future events. The event provided a relaxed atmosphere with extended family members present, allowing for multi-generational and diverse recruitment. When considering a genotyping day versus scheduled clinic time, additional preparation time is needed to arrange logistics and avoid error, but the number of participants is significantly increased.