Data Access

Available data

Through the years, data have been collected about many different topics, including mental health, obesity, asthma, school performance, criminal offending, violence victimisation, neighbourhood conditions, the family environment, and also biomarkers to investigate inflammation, gene expression, epigenetic DNA methylation, polygenic scores, telomeres, and neuropsychological functions. Currently data are available to access for the assessments conducted at ages 5, 7, 10, 12 and 18 years. Note, we have recently received funding from the MRC to collect a new wave of data when the twins are aged 30 (in 2024-2025) and this data will become available for researchers to access by the end of February 2027.

Information about the mental health measures available for E-Risk twins at different ages is provided in the Catalogue of Mental Health Measures (part of DATAMIND): https://www.cataloguementalhealth.ac.uk/?content=study&studyid=ERisk For detailed information about the other measures available, please contact the E-Risk Study team on [email protected]

Accessing the data

E-Risk data is free to access by researchers from all over the world (and students via their academic supervisor) who are based at universities or research organisations. We operate a managed access process to protect the privacy of our participants and the integrity of our study. Our data sharing protocol observes the Five Safes principles: the data is safe (only non-identifiable data is shared); the projects utilising the data are safe (E-Risk data owners have to approve projects and these must be for the public good); the people using the data are safe (must be bona fide researchers based at universities or research organisations and academic supervisors must sponsor their students to apply, plus we require all applicants to attest that they have undertaken appropriate ethical data handling training); the setting in which data is used is safe (data is sent securely in encrypted files and we mandate that users must have installed appropriate controls on their computers and cannot share the data); and the outputs are safe (the E-Risk PI must approve all outputs to ensure they are non-disclosive and adhere with funder requirements).

Below is an overview of the process for accessing the existing E-Risk data. Please read the data sharing protocol (available to download below) which provides full details of how to obtain access to this data and the procedures that must be adhered to when using the data and publishing your subsequent findings.

If you have any questions at any point during the process, then please email the E-Risk Study team on [email protected] and we will be more than happy to help.

Overview of E-Risk data access process

• Read the entirety of the data sharing protocol
• Check the existing E-Risk approved projects available here to ensure your proposed idea is novel
• Contact Prof Helen Fisher ([email protected]) to discuss the feasibility of your idea and to arrange for an E-Risk co-investigator to sponsor your project (if needed)
• Complete a brief concept paper form outlining your proposed analyses and the variables required using this online form: https://redcap.link/ERiskConceptPaperForm 
• Prof Fisher will circulate your concept paper within 5 working days of receipt to the E-Risk steering committee and named co-authors for review
• You will receive a decision via email within 1 month of circulation along with the signed approval forms and any comments (if any concerns are raised then Prof Fisher will discuss revising the concept paper with you)
• Ensure you have completed ethical training on handling data (www.citiprogram.org or equivalent) & that your computer is (a) encrypted at the hard drive level, (b) password-protected, (c) configured to lock after 15 minutes of inactivity, AND (d) has an antivirus client which is updated regularly.
• Once approved, your concept paper will be made public on this website: https://sites.duke.edu/moffittcaspiprojects/ and the data will be sent securely to you within 1-2 months* after a formal data use agreement has been signed (where relevant). 

* The E-Risk data manager will aim to provide a dataset for the applicant’s project within 1 month of a formal data use agreement being signed (if one is required), but this will increase to within 2 months during a data collection phase as this is a particularly busy period for this member of staff.

Please read the data sharing protocol: View PDF

Please submit your concept paper using this online form: https://redcap.link/ERiskConceptPaperForm

An offline template of the concept paper form is available here: Download Form