Communication of genetic information in families: A randomised trial of a genetic counselling intervention.

Not Applicable

Recruiting

• Conditions: Inherited conditions; Chromosomal translocations; Human Genetics and Inherited Disorders - Cystic fibrosis; Human Genetics and Inherited Disorders - Other human genetics and inherited disorders

• Registration Number: ACTRN12608000642381
• Lead Sponsor: A/Prof Jane Halliday

Brief Summary

Not available

Detailed Description

Not available

Study Timeline

• Results First Posted: 1900-01-01
• Study Start: 2008-12-17
• Last Update Posted: 13 January 2020

Recruitment & Eligibility

• Status: Recruiting
• Sex: All
• Target Recruitment: 140

Inclusion Criteria

1. Individuals or parents of children who are the first in a family to receive a diagnosis of a genetic condition that has implications for family members.
2. Have at least one at-risk relative living in Victoria.
3. Able to speak, read and write English

Exclusion Criteria

1. History of psychiatric illness or cognitive disorder that may affect ability to provide informed consent
2. A diagnosis during pregnancy
3. Overseas or interstate patients

Study & Design

• Study Type: Interventional
• Study Design: Not specified

Primary Outcome Measures

Name	Time	Method
Proportion of family members accessing genetics services for either genetic counselling and/or genetic testing. Genetic files and laboratory records will be audited to determine if family members have accessed genetic services.[12 months after inclusion into the trial.]

Secondary Outcome Measures

Name	Time	Method
Participant self-report of the number of family members informed about genetic information[12 months after inclusion in the trial.];Process evaluation including qualitative analysis of the experiences of participants and intervention providers[12 months after inclusion in the trial.]