Primary goal: To collect a sample of serum and DNA of as many as possible of those patients whose data is listed in the SCQM Registry and will be recorded in the future. This biological material is stored in the SCQM Biobank and used for biomedical research.
Which patients? All patients included in the SCQM Registry, provided they consent to samples being taken from them in a Declaration of Informed Consent (Patient Briefing (DE/FR/IT) / Declaration of Informed Consent (DE/FR/IT).
Can patients withdraw their consent? Yes, address any withdrawal of consent to: SCQM Foundation, Aargauerstrasse 250, 8048 Zurich, Tel. 043 268 55 77, e-mail: firstname.lastname@example.org. From this moment onwards, their samples and data will no longer be forwarded to researchers or other biobanks.
Who may conduct research? The clinical data and Biobank data is available to all researchers Project applications must be submitted, to be assessed and approved by the Scientific Advisory Board, the Council of the SCQM Foundation and an Ethics Committees (see also: Rules for Research and Collaboration).
How are the biosamples collected and processed?
- Material: The SCQM provides the material for blood sampling and transportation of the samples.
- When? Samples should be taken as part of normal blood sampling in order not to cause patients additional stress.
- Processing: To obtain serum, the blood must be centrifuged locally. Serum is then cooled and stored at at least -18° C. The blood for DNA analysis must also be cooled and stored at at least -18° C.
- Data recording: The details covering the taking, processing and storage of blood samples and serum are recorded on the identification labels and in the online database. The data recorded in the online database informs the database officer that the stored biosamples need to be picked up.
- Transport: The samples are picked up by a courier from surgeries or hospitals. The transportation container is a cool box with dry ice. Both are provided by the courier. Samples are picked up every 4 weeks. Surgeries or clinics are given prior notice by the SCQM of pick up dates and times.
- Storage: Biosamples are stored in the Central Serotheque of the Geneva University Hospital, Department of Genetic Medicine and Laboratory (Director: Prof. Denis Hochstrasser), Geneva University Hospital. Upon arrival in the laboratory, the samples are tested and then prepared for storage according to precisely defined processes. Storage is at -80° C for serum samples and at -20° C for DNA.
- Costs: The SCQM Biobank bears the costs of materials and transportation.