UK VUR DNA Collection. Terms and Conditions

1. Under no circumstances will you, or anyone acting on your behalf, attempt to identify or contact any of the individuals included in the cohort.

All material provided to you will be anonymised. Where appropriate relevant clinical details relating to samples can also be provided; if such information is considered necessary, its release to you will be agreed as part of your initial application. Please note that post- genotyping requests for such information will not be granted. Patient identifying information will not be released. All information about individuals in the cohort is held in line with the Data Protection Act.

2. You must have ethical approval for the research you are planning to perform.

You will be required to provide documentary evidence for this as part of the application process.

3. You must have funding for the reseach you are intending to undertake.

Samples will not be released until funding is secured. If you are in the process of applying for funding and would like to refer to the cohort as material you intend to use you must obtain approval from the development group before submitting any such application. If you obtain funding on the basis of having access to the cohort without first confirming this with the development group your application for access may be rejected.

4. You must not perform any research on material from the cohort that was not agreed as part of your initial application.

The development group is keen to avoid duplication of effort and therefore if results from agreed research prompt new lines of inquiry you must receive approval from the group before undertaking any additional work, such applications may be rejected if other users of the cohort are already undertaking this work.

5. You must not release any material from the cohort to third parties.

6. You must accept full responsibility for all aspects of safety concerning the use of the material that you receive.

Material from the cohort is of human origin and is therefore potentially infectious and may be otherwise dangerous, the development group does not accept any responsibility for loss or injury caused by the use of the material supplied to a successful applicant.

7. You must acknowledge use of the collection in any publication arising out research involving material from the cohort and supply the development group with a reprint.

8. You must meet all costs connected with supplying any cohort material you receive.

Material is supplied on a nonprofit making basis, but you will need to ensure that you have sufficient funds to cover the costs of aliquoting and shipping the material you request.