Clinical trial NCT05064241: Overcoming Barriers to Accessing Genetic Medicine
Official title: Investigations of Barriers and Methods to Overcome Barriers to Access Genetic Medicine
Study type: INTERVENTIONAL
Overall status: ACTIVE_NOT_RECRUITING
Phase: NA
Conditions: Genetic Disease
Genetic Predisposition
Lead sponsor: Boston Children's Hospital
Sponsor class: OTHER
Collaborators: name: National Human Genome Research Institute (NHGRI)
First posted: 2021-10-01
Enrollment: 70
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: no
Allocation: RANDOMIZED
Intervention model: PARALLEL
Intervention model description: One group has access to a genetic counselor answering their questions, another group has peer-to-peer conversation. However, at the end of the study, the genetic counselor will answer the questions asked in the peer-to-peer discussion board.
Primary purpose: HEALTH_SERVICES_RESEARCH

Brief summary: To learn about patient barriers to accessing genetic medicine, we will analyze anonymous posts from a membership-based online community \[Inspire.com\], and investigate how these barriers differ for various populations. We will then test whether these barriers can be addressed by providing online access to a genetic counselor to answer patient questions for one group of patients (virtual advisory board group) and compare to that of a control group who does not have access to a genetic counselor (virtual peer-to-peer board group).

Detailed description: Genomic medicine has the potential to advance diagnoses, predict risk, support prevention efforts, and inform treatment decision-making. Though technologies for measuring genetic variants have improved and become more cost-effective, clinical integration of genomic medicine has been surprisingly slow. For genomic medicine to be successfully implemented across specialties and across demographics, the systemic barriers that patients experience need to be identified and addressed.

Online health support is becoming an increasingly important part of healthcare as more patients use digital health networks. In the first part of this study, an analysis of online communication in a membership-based online support community \[Inspire.com\] will identify systemic, structural and individual barriers to accessing genomic medicine. A genetic counselor will be informed to these results and will be part of the intervention arm of the study.

To assess the extent to which online health networks can directly help genomic medicine implementation, participants will join one of two Virtual Discussion Boards (a Virtual Advisory Board and a Virtual Peer-to-Peer Discussion Board). In the intervention arm, the Virtual Advisory Board will have a genetic counselor answer patient questions online about genomic medicine once every week for a period of three months. In the control arm, participants will answer and comment on each others' questions in the Virtual Peer-to-Peer Discussion Board. We hypothesize that after six months, patients who participate in the Virtual Advisory Board are more likely to self-report receiving genomic medicine than those in the control arm. After completion of the study, participants in the Peer-to-Peer Discussion Board, we will give online access to the genetic counselor to answer any questions

Eligibility criteria: Inclusion Criteria:

Member of Inspire.com Genetic disease Genetic predisposition to disease -

Exclusion Criteria:

Not member of Inspire.com No genetic disease No genetic predisposition to disease

-

Primary outcomes:
measure: Qualitative self-report of referrals for clinical genetic services
timeFrame: 6 months
Secondary outcomes:
measure: Qualitative self-report of specific barriers to the participant accessing genomic medicine
timeFrame: 6 months
measure: Self-report of specific behaviors to overcome barriers to accessing genetic medicine
timeFrame: 6 months
Other outcomes:
Locations:
city: Boston
country: United States
facility: Boston Children's Hospital
state: Massachusetts
Study officials:
References: