Overcoming Barriers to Accessing Genetic Medicine

NCT05064241 | Active Not Recruiting

• 1 other identifier: P00039779
• Study Type: interventional
• Target: 70
• Locations: 1 country
• Sites: 1

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).

Conditions

Genetic Disease; Genetic Predisposition

Outcome Measures

Primary Outcomes (1)

• Qualitative self-report of referrals for clinical genetic services

  Percentage of participants with self-report of referrals for clinical genetic services

  6 months

Secondary Outcomes (2)

• Qualitative self-report of specific barriers to the participant accessing genomic medicine

  6 months

• Self-report of specific behaviors to overcome barriers to accessing genetic medicine

  6 months

Study Arms (2)

Virtual Advisory Board

EXPERIMENTAL

Participants have access to a genetic counselor to answer their questions on accessing genetic medicine.

Other: Access to Genetic Counselor for answering questions

Virtual Peer-to-Peer Discussion Board

NO INTERVENTION

Participants answer each others' questions on the topic of accessing genetic medicine.

Interventions

Access to Genetic Counselor for answering questions OTHER

A genetic counselor answers questions posed by participants in the intervention arm on how to access genetic medicine. At the end of the study, the number of participants who were able to access genetic medicine will be assessed

Virtual Advisory Board

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

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

You may not qualify if:

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

Sponsors & Collaborators

• Boston Children's Hospital: lead
• National Human Genome Research Institute (NHGRI): collaborator

Study Sites (1)

Boston Children's Hospital

Boston, Massachusetts, 02115, United States

Location

MeSH Terms

Conditions

Genetic Diseases, Inborn; Genetic Predisposition to Disease

Condition Hierarchy (Ancestors)

Congenital, Hereditary, and Neonatal Diseases and Abnormalities; Disease Susceptibility; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: SINGLE
• Who Masked: PARTICIPANT
• Masking Details: Participants will not be told which discussion board they are randomized to. However, they may possibly discover that one board has a genetic counselor, and the other does not.
• Purpose: HEALTH SERVICES RESEARCH
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Assistant Professor

Model Details: 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.

Study Record Dates

• First Submitted: September 22, 2021
• First Posted: October 1, 2021
• Study Start: April 15, 2023
• Primary Completion: July 30, 2023
• Study Completion: September 30, 2025
• Last Updated: July 3, 2024

Record last verified: 2024-06

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)