Research consensus

The research consent allows encrypted treatment data and residual materials (e.g. urine, blood) that would otherwise be disposed of to be used for research purposes. Encrypted means that all personal details are replaced by a code so that third parties cannot draw any conclusions about the person concerned. In exceptional cases, the encryption can be removed by authorised employees if this is of benefit to the patient. This allows patients to be informed of any incidental findings, for example.

• Consent can be revoked at any time without giving reasons.
• Consent or refusal has no influence on the medical treatment.
• You have the right to inspect your medical file at any time.
• There are no additional costs for participation.
• No financial gain is realised from the treatment data or residual materials used.
• There are no financial benefits for either the person concerned or the hospital.
• Research projects within the framework of the research consensus do not generally lead to individual health-relevant results. If a significant result is nevertheless obtained, the UKBB can be contacted.
• The consent is valid for an unlimited period of time.

According to the Human Research Act (HRA), patients or their parents or legal representatives must be informed and provide written consent before personal data from routine clinical care and/or residual material from samples can be used in encrypted form for research projects.

What does the UKBB research consortium make possible?

With a one-off consent

• data from clinical routine (e.g. laboratory values, findings) as well as residual material (e.g. blood, urine) generated during treatment can be coded and used for research purposes independently of the project;
• researchers can be given efficient access to this data for scientific projects that have been approved in advance by an ethics committee.

What does encryption mean?

During encryption, all personal information that allows conclusions to be drawn about the person concerned (e.g. name, date of birth) is replaced by a code. This code - the so-called key - can only be viewed by specially authorised persons.

The UKBB provides a Detailed information brochure in German available. A short information sheet is also available in the following languages:

• German
• French
• Italian
• English
• Spanish
• Turkish
• Albanian

If you wish to revoke your consent, please contact us, stating the patient's name and date of birth:

University Children's Hospital Basel
Paediatric Research Centre
Keyword: Clinical research
Spitalstrasse 33
4056 Basel

e-mail: pfz@ukbb.ch
Telephone: +41 61704 28 53 / +41 61704 28 54

The UKBB Research Consent allows the further use of encrypted, non-genetic and genetic personal data and residual biological material from routine clinical care. Under certain conditions, the research consent can also be applied for use in registries.

Researchers who are planning a project with the Research Consent at UKBB can contact the Paediatric Research Centre (PFZ) contact. The most effective way to utilise the research consents is determined together and the necessary conditions are discussed.