Genetic data access

The different types of genetic data products and how to access them are listed on https://www.elsa-project.ac.uk/genetics. The process detailed here is specifically for researchers who would like to access ELSA genetic data linked to phenotypic data. 

 

ELSA Genetic Data Access Committee

 

Researchers who wish to link the ELSA GWAS or existing candidate gene polymorphisms with ELSA phenotypic data are required to submit a full application to the ELSA Genetic Data Access Committee (ELSA-GDAC).

 

Please read the application guidelines and application assessment criteria below before compiling your application.

 

You will need to specify (in word or excel) the variable name, description, and which waves you require the data from so that these can be examined by the data access committee. An example of such a file is included below:

genetics table.png

Application process


Applicants are invited to download and complete the Word application form below, which should be sent to Dr Olesya Ajnakina (o.ajnakina@ucl.ac.uk). Applications will be evaluated by the ELSA-GDAC. This committee meets monthly, but decisions can be made between meetings.

Favourable decisions about these applications depend on the suitability of the ELSA phenotypic data for the topic under investigation and the potential for identification of the participant despite de-identification of the data.

Applicants should allow three months for this process, though most should be completed within one month. Please bear this in mind if you are making a grant application around these data. See more information below.




Application forms and guidance


Application form [link to file]

Assessment criteria [link to file]

Plain language summaries guidance [link to file]

Incidental findings guidance [link to file]




Conditions for the use of ELSA genetic material


a. The samples and related data and intellectual property rights belong to the collaborating institutions (UCL, Institute for Fiscal Studies, the University of Manchester, the University of East Anglia and NatCen Social Research).

b. If any commercial revenues result from the Recipient's use of the materials, UCL shall be entitled to a fair and reasonable share of any such revenues that accrue to the Institution or the Recipient.

c. The applicant will acknowledge the UK government funding departments NIA, UCL Genomics, LGC Genomics and Source BioScience where appropriate. The following language should be used 'Samples from the English Longitudinal Study of Ageing were used in this study. ELSA is funded by the National Institute on Aging (NIH) and by a consortium of UK government departments: Department of Health and Social Care; Department for Transport; Department for Work and Pensions, coordinated by the National Institute for Health Research (NIHR). Funding has also been provided by the Economic and Social Research Council (ESRC). We thank contributors and the ELSA participants’.

d. Data provided to the applicants can only be used for the purposes originally stated and must not be used in any other way without re-application to the ELSA-GDAC.

e. No data should be passed on to any third party unless they were specified in the original application.

f. No applications that request sole access to a specific phenotype will be accepted.

g. Any grant applications based on the genotyping data should include a covering letter from the ELSA-GDAC stating that the project has been approved by the committee or will be considered on a specific date.




Grant applications


Applicants who require agreement before submitting grants should bear in mind that the ELSA-GDAC must receive the completed research proposal form at least one month before the submission deadline.

It is the responsibility of the researcher to ensure compliance with their funder’s terms and conditions with respect to their use of ELSA genetic data. Supervisors are ultimately responsible for their PhD students in the same way that PIs are responsible for their researchers.

We therefore request that any proposals for PhD projects are submitted jointly with the supervisor rather than the student themselves.




Costs


ELSA receives funding from the National Institute on Aging via the National Institutes of Health in the US and a consortium of Government Departments coordinated by NIHR to support data collection and basic data management.

This does not extend to providing support for individual projects, and researchers will be expected to meet the additional costs for data access and provision. All researchers who make a successful application to access ELSA genetic data linked to phenotypic data will be charged on a cost recovery basis. This cost will vary depending on the amount and type of data. The charges for data requests are outlined in Table 1.

Please note, we cannot give discounts to PhD students or for any other reason. Once a proposal has been approved and the applicant informed of the costs, these are non-negotiable. Costs will be determined on a project-by-project basis and will reflect the true costs to the ELSA team of providing the resources requested. Once a proposal has been agreed in principle an accurate costing will be provided.

Example costings for data requests are provided below. Data will not be provided until an invoice has been settled or a purchase order number is received by our finance department. VAT will be charged where applicable.

For any further questions please contact Dr Olesya Ajnakina (o.ajnakina@ucl.ac.uk).