Your information will be kept safe according to the Data Protection Act 1998. Your personal information will be kept separate from the anonymous research data. The research team will store your personal information on a secure database at Newcastle University. The database will only be accessed by research staff working on the study and individuals from the relevant agencies or the Northumberland Tyne and Wear NHS Foundation Trust, to check the quality of the research. No personal information will ever be released to researchers or anyone else. Any information that is published will always be anonymised.
A Research Committee will be formed in 2015 to decides which research studies adults on the autism spectrum and their relatives can be contacted about.
Researchers wishing to recruit participants from the Adult Autism Spectrum Cohort will have to submit an application to the Research Committee for review and assessment.