Developmental Disorders Research Database
Research type
Research Database
IRAS ID
329152
Contact name
Grainne McAlonan
Contact email
Clinicaltrials.gov Identifier
18/LO/0354, ; ,
Duration of Study in the UK
years, months, days
Research summary
Clinical Research of Developmental Disorders
REC name
London - South East Research Ethics Committee
REC reference
23/LO/0596
Date of REC Opinion
20 Oct 2023
REC opinion
Further Information Favourable Opinion
Data collection arrangements
Two NAASA research databases will be maintained. They will contain different types of information and will be used for different purposes. All patients at the NAASA will be invited to be included after they have been assessed in the clinic. Patients will be assigned a NAASA ID code to ensure anonymity.
Database 1: The ‘NAASA Research Patients Contact Information Database’ will contain the following information:
- Name
- NAASA database ID
- DOB
- Sex
- Age at appointment
- Has this patient consented to be contacted for research? (Yes / No)
- If they did consent to be contacted then contact information will be listed (phone number, email address, postal address).Database 2: The ‘De-identified Research Database’ will be the anonymous database which includes the information collected during clinical assessment. This includes:
- NAASA database ID
- Month and year of birth
- Sex
- Demographic information (e.g. age at appointment & education)
- Diagnosis (ASD and/or ADHD)
- Clinical data (e.g. co-morbid diagnoses & medication)
- ADOS-2, ADI-R and DIVA scores
- Clinical questionnaire scores
- Has this patient consented to be contacted for research (Yes/No)This database will be updated regularly to indicate what other projects the individual has been contacted for, and whether or not they took part. If they completed any standardised IQ measures the results will be recorded here
Research programme
Individuals assessed for neurodevelopmental disorders (Autism Spectrum Disorders, Behavioural Genetics Disorders and ADHD) will be supported by this database. The research that will be facilitated will aim to improve efficiency of diagnostic assessment and effectiveness of treatment. This will have a positive impact on the health care of individuals with the conditions, as well as their family members and carers. The database will also provide those patients that attend the NAASA with the opportunity to take part in research studies. In addition, the database can be used to avoid burdening participants by asking them to re-do any tests that might be used in several different studies (e.g. IQ tests). Some research studies that are made possible through the use of the database could have a positive impact on the participants themselves. For example, studies might involve interviewing patients about their experiences before and after diagnosis. Discussing such issues may be beneficial for the participants and have a positive outcome for other individuals in a similar situation
Research database title
Clinical Research of Developmental Disorders
Establishment organisation
Institute of Psychiatry, Psychology and Neuroscience (IoPPN)
Establishment organisation address
De Crespigny Park
Denmark Hill
SE5 8AF