The Disabilities Trust uses the definition of research outlined by the Health Research Authority (HRA). All projects that meet this definition require prior review and approval by the relevant bodies. This process includes the review of information materials and consent forms. No personal information will be gathered for research purposes without your prior written consent.

Why we use your personal information

If you are invited, and give informed consent, to take part in our research, we use your data for the following purposes: -

  • To fulfil the research objectives of the specific project in which you agreed to participate;
  • To share information about other relevant projects.

How we obtain your personal information and the types of personal information we may obtain

Your personal information is directly given by you.

The type of personal information in relation to you we process may include - e. g. (this is not an exhaustive list):

  • General Personal details (Name, Address & contact Info);
  • Information about your medical history.

However, you will be provided with specific details about what information will be collected, and about what participation will entail prior to giving your consent to take part in research.

Our legal basis for using your personal information:

Who we may share your personal information with

The personal information you provide will always be kept separately from research data, which is stored in an anonymised format. Some projects may require sharing of information with specific academic partners. You will be informed of the identity of these partners and about the nature of the information to be shared prior to giving your consent to share. Only the named investigators of a particular project will have access to this information and will only use your personal data in order to meet previously specified research objectives.

The transfer of your personal information to a Country or International Organisation outside of the European Union

Any transfer of personal information outside the European Union will require approval by the relevant bodies. This will be stated explicitly in the information materials you receive, and no transfers of data will occur without your explicit consent.

How long we keep hold of your data

We retain the personal information processed by us, only for as long as is considered necessary for the purpose for which it was collected (including as required by applicable law or regulation). Our Records Retention Policy sets out how long records should be retained.

Automated Decision Making & Profiling

We do not make any decisions in relation to your personal information, solely by automated means without any human involvement (e.g. we do not conduct automated decision making).

Neither do we conduct any automated processing of personal information to evaluate certain things about you (e.g. we do not conduct profiling).