Research consent

• With the agreement of the research consent, genetic and non-genetic personal medical data and residual material from samples from routine care may be used for research in encrypted form.
• Patients or legal representatives have the right to access their medical records.
• With consent, no additional costs are incurred.
• The UKBB does not earn any money with the data/residual material. Neither the patients nor their legal representatives nor the hospital benefit financially.
• Projects on research consents usually do not lead to information that is relevant for the health of an individual. If a significant result is found for a patient with an available medical measure/therapy, the hospital may contact the patient.
• Consent may be revoked at any time without justification.

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

The research consent UKBB enables that

• With a one-time consent from patients or parents/legal representatives, clinical routine data and residual material may be used in encrypted form independent of the project / for research purposes.
• Researchers/scientists have time-effective access to clinical data for their ethics-approved research projects.

What does encryption mean?

• Encryption means that all information that allows conclusions to be drawn about the person, such as name or date of birth, is replaced by a code (key). The key can only be viewed by defined persons.

The patients or parents/legal representatives receive an information sheet with a personalized consent form and are informed about the research consent by trained personnel. There will be an opportunity for questions during the interview. Subsequently, a voluntary decision can be made whether or not to give consent. The decision is recorded in writing on the consent form. For children under the age of 14, the signature of the parent/legal guardian is mandatory. From the age of 14, the sole signature of the patient of legal age is sufficient. If patients reach the age of 18 and are cared for at the UKBB, they will be asked again.

The consent/refusal given is noted. This ensures that the patients or parents/legal representatives are not asked repeatedly. The signed consent form is archived.

The UKBB has a detailed information brochure in German. The short information sheet is available in seven languages:

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

If you have any questions, the Pediatric Research Center (PRC) can be contacted at

• Email
• Phone: +41 61 704 28 53

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

University Children's Hospital Basel
Pediatric Research Center
Keyword: Clinical Research
Spitalstrasse 33
4056 Basel    

E-Mail

Phone: +41 61704 28 53 / +41 61704 28 54

The UKBB Research Consent allows the further use of coded, non-genetic and genetic personal data/biological residual material from clinical routine . It can also be used for registries under certain conditions.

Researchers planning a project with the Research Consent at UKBB can contact the Pediatric Research Center (PRC) for an initial consultation. In this way, the most effective way to use the research consents can be planned and the necessary requirements discussed.