Testing the efficacy of an online interactive decision aid and educational tool to help parents of children with intellectually disabilities choose whether or not to have genome-wide sequencing

Authors
Category Primary study
Registry of TrialsISRCTN registry
Year 2015
INTERVENTION: Two different methods of providing genetic counselling‐type information for parents to help them to choose whether or not to have genome‐wide sequencing: 1. DECIDE 2. Conventional genetic counselling Arm 1 will have DECIDE first followed by genetic counselling; arm 2 will have genetic counselling followed by DECIDE. CONDITION: Intellectual disabilty ; Mental and Behavioural Disorders ; Intellectual disabilty PRIMARY OUTCOME: Participants' empowerment: will be measured with GCOS‐24 at time 0, 1 month and study exit (6 months) SECONDARY OUTCOME: 1. Participants' knowledge; 2. Participants' decisional conflict (validated scale by O'Connor, Ottawa Decision Support Framework group); 3. Participants' decisional regret scale (validated scale by O'Connor, Ottawa Decision Support Framework group); These will be measured at time 0, 1 month and study exit (6 months). INCLUSION CRITERIA: 1. Two‐parent family with child who has a significant developmental delay or intellectual disability with an unidentified cause after standard testing, including microarray, and who has been seen by Dr Anna Lehman (University of British Columbia, Department of Medical Genetics, Canada) 2. Fluent in English 3. Access to the internet 4. All ages, but mostly age 0–18 years
Epistemonikos ID: ba16ca7b72426bc658b3ab3e7c3aefc42488dab9
First added on: Aug 23, 2024