Memorandum of Understanding (MoU) for Data Access

The Data Access process is governed by a Memorandum of Understanding (MoU), ensuring that all parties agree on the terms of data use, security, and privacy. The MoU defines the roles and responsibilities of the data provider and the requesting party. All users must agree to the MoU before any data can be accessed. See - MoU Documents.

Data Access Procedure

The data access procedure involves several steps to ensure compliance with data protection policies and fair use practices. Upon submission of the Data Access Request form, applicants should anticipate a processing period of several weeks, contingent upon the institution’s administrative procedures. It is advisable to account for this timeframe in your planning. For a detailed overview of the process, please refer to the figure below:

Terms and Conditions of Use

The Psy-ShareD data access procedure should be followed as illustrated in the figure located in the Data Access Procedure section. Data catalogues can be viewed on KCL FigShare and via the Psy-ShareD website. Please note that the variables listed in the data catalogues are not exhaustive and some datasets may contain variables not listed in the data catalogues. The data catalogues do list all primary clinical, medication, demographic and neuropsychological/cognitive variables.

All data access is via a data access request that is reviewed by the Psy-ShareD Data Management Committee (DMC). Members of the DMC can be viewed here. The Data Access Request Form (DARF) can be accessed here.

The DMC will review the data access request (usually within 2-weeks) and may ask the applicants to resubmit an amended version of the DARF if clarification is needed (see guidance). 

Once a data access request has been approved by the DMC the Chair will request a Data Use Agreement (DUA). The DUA is a legal contract that is established between King’s College London and the recipient institution. The DUA agreement sets out the terms and conditions of data use as well as the agreed duration for data use. Data transfer from KCL to the recipient institution cannot take place until the DUA has been completed. 

Once the data user(s) have completed their data analysis any subsequent publications are subject to the publication policy explained in the Psy-ShareD Memorandum of Understanding (here). 

Other terms and conditions that should be noted: 

Participant consent for data sharing and reuse are checked in each dataset. Where consent for reuse has been withdrawn and not provided individual data are removed. 

In some older KCL datasets information regarding informed consent is no longer available. However, as these are fully anonymised datasets their reuse is allowed under NHS Database ethical approval. 

Datasets acquired after July 31st 2022 will need to comply with NHS National Data-Opt out service (https://digital.nhs.uk/services/national-data-opt-out/compliance-with-the-national-data-opt-out). Currently Psy-ShareD hosts no datasets that were acquired after this date. 

Healthy Control (HC) data is provided in several Psy-ShareD datasets. It should be noted by Data users that in some cases HC were recruited to studies without a full diagnostic assessment for psychiatric and/or neurological conditions. Data users are responsible for assessing the suitability of HC control data for their particular studies and hypotheses.  

Data Access Form

To access the data, please fill out the following request form and send it to psy_shared@kcl.ac.uk. Once submitted, your request will be reviewed, and further instructions will be provided.