Information for Researchers & Data Access

The IMAGINE ID study is creating a lasting resource for research into intellectual disability, genotype and mental health. Researchers who would like to use IMAGINE ID data should look at our dedicated data access and policy page here, for further information please contact the team at University College London on ich.imagineid@ucl.ac.uk  You can also download our IMAGINE ID Data Access Policy and IMAGINE ID Data Access Form.

Healthcare professionals

IMAGINE ID has recruited over 3,400 families over a 5 year period. The study has been funded by the Medical Research Council.

The study has collected genomic coordinates of all affected individuals who have had a molecular investigation into the cause of their intellectual disability (ID). Individuals with pathogenic Copy Number Variants (CNV) and/or Single Nucleotide Variants (SNV) that are thought to be the cause of the condition are eligible to join.

We have collected information about children and young adults with ID from families using a secure, accredited online portal. We hope to learn about children’s development, behaviour, mental health and well-being, where a genetic cause underlies the diagnosis, using standardised assessments.

  • Eligibility
  • Recruitment
  • Questionnaires
  • Interviews
  • Study documents

Children 4 years and over with a diagnosed genetic condition and intellectual disability/developmental delay/learning difficulties are welcome to join the study. Adults with a parent/guardian willing to complete the assessments about them can now join the study as well.

Confirmation of each participant’s genomic coordinates (CNV or SNV) will be completed through access to medical records via Regional Genetics Laboratories. Families who do not have a genetics report from an NHS Genetics Laboratory will be asked to provide one when joining the study.

IMAGINE ID have now closed recruitment. During 2014-Sept 2019 we largely recruited through UK Regional Genetics Centres, charities, support groups, other research studies and social media.

Study documents can be found here.

Once recruited, families were asked to complete some questionnaires including the Development And Well Being Assessment (DAWBA), as well as their family and clinical history.

Detailed information for researchers and clinicians about the DAWBA can be found at www.dawba.com and a list of available translations for the questionnaire can be found here

The assessments  take about 3 hours in total, but families do not have to complete them all in one go. Their answers will be saved as they go along. If they cannot do this online, the IMAGINE ID team are happy to complete the questionnaires with them in person or over the phone.

Once the initial assessments have been completed, we asked a few families if they would like to take part in a face-to-face meeting with the IMAGINE ID team for further detailed developmental and behavioural assessments. This included some additional games, puzzles and tasks with the child and family.

Interviews typically take between 4-5 hours and are completed in the comfort and convenience of the family home.

 The study documents can be downloaded here

Below is the study’s current timeline

1
Phase 1 (completed)

In October 2014, IMAGINE-1 was launched and established contact with 22 Regional Genetics Centres across the UK, as well as self-referred families. Recruitment opened for eligible families.

2
Phase 2 (completed)

By June 2019, online questionnaires with 3,000 families and 500 additional face-to-face assessments had been completed.

3
Phase 3 (on-going)

IMAGINE-2 aims to complete to follow-up questionnaires with all IMAGINE ID families. We are currently analysing data from IMAGINE-1,