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

Assessing the clinical utility of a novel e-counselling aid for clinical genome-wide sequencing (DECIDE): a randomised cross over trial

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

ISRCTN

Registry ID

ISRCTN11625873

Enrollment

Registered

2015-02-19

Start date

2017-11-01

Completion date

Unknown

Last updated

2018-11-19

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Intellectual disabilty Mental and Behavioural Disorders Intellectual disabilty

Interventions

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 2 will have genetic counselling followed by DECIDE.

Eligibility

Sex/Gender

All

Inclusion criteria

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

Exclusion criteria

Exclusion criteria: Not meeting inclusion criteria

Design outcomes

Primary

Measure	Time frame
Participants' empowerment: will be measured with GCOS-24 at time 0, 1 month and study exit (6 months)	—

Secondary

Measure	Time frame
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).	—

Countries

Canada

Outcome results

None listed

Source: ISRCTN (via WHO ICTRP) · Data processed: Feb 4, 2026