Information to patients and the general public
U-CAN is one of the ‘Strategic Research Areas’ initiated and funded by the Swedish government. Since 2010 the project is run as a collaboration between Uppsala University (heading the project), Umeå University, The Royal Institute of Technology (KTH) and Stockholm University. Sampling from patients is done in Uppsala and Umeå in very close collaboration with the health care system, the University Hospitals and the regional Biobanks. The hospitals in Gävle, Falun, Karlstad and Västerås are also affiliated to Uppsala and also collect patient samples and data within U-CAN.
The close collaboration between Universities the and health care system has facilitated the construction of an effective logistics structure with regards to hospital integrated biobanking, which in turn creates a unique and highly valuable collection of patient materials and data for ongoing and future cancer research. The materials collected by U-CAN are made available to academic researchers and companies alike, both domestically and internationally. Any researcher or organization interested in cancer research are eligible to apply for samples and data.
What does U-CAN do?
The core activities of U-CAN revolve around collecting samples and data from patients with different types of cancer in order for these samples to be prospectively used for cancer research projects. The overall aim is to constitute a central hub and an important resource for research striving to develop novel methods of diagnostics, facilitate early detection of cancer and/or predict the most effective treatment on an individual basis. By conducting a structured sample collection the U-CAN project improves both the availability and the quality of collected samples, which in turn constitutes the backbone of all high quality translational cancer research.
What does it mean to participate as a patient?
In order to participate in U-CAN you must sign an informed consent form. Participation in U-CAN is completely voluntary and you can choose to refrain completely from participation or at any time withdraw your consent without an explanation and without any consequences on your care or treatment.
As a U-CAN participant you consent to donating blood and tissue samples (from surgeries or biopsies) that will be earmarked specifically for research purposes. This entails that from time to time you will be asked to donate some extra blood samples and that both the blood samples and parts of your tumour tissue will be saved in a Biobank. Furthermore, by participating in U-CAN you consent and allow U-CAN to obtain, save and use information from e.g. your patient journal, your questionnaire(s), radiology examinations and other laboratory data for research purposes.
The uniqueness of U-CAN is that samples from each patient are collected over time, for instance at diagnosis, at surgery, in connection with treatments and/or at clinical follow-up visits. The collection of follow-up samples from the same individual over time enables researchers to investigate and pose advanced questions regarding the development and treatment of tumours. In light of this, patient participation in U-CAN thus contributes to giving researchers improved possibilities to understand and treat cancer. Samples and data donated by an individual patient to U-CAN may be used in many different studies and by several different research groups for many years to come.
Participation in U-CAN as a control person
In order to assess whether or not cancer patient samples deviate in some form or other, research also needs to analyse samples from patients without a cancer diagnosis for comparative analysis. For this reason, in addition to collecting samples and data from cancer patients, other patient groups or healthy volunteers are asked to participate in U-CAN with the purpose of collecting and using these samples as comparative materials (“controls”) to the cancer samples. Samples and data from patients included in U-CAN on the suspicion of cancer where the diagnosis eventually was determined to be something other than cancer are also valuable through their potential use as comparative control samples.
Examples of groups where collection of control material is either ongoing or subject to previous collection are: patients with ovarian cysts, patients with post menstrual bleeding, patients undergoing rectal endoscopy and volunteering health care staff donating control samples.
The difference between participating in U-CAN as cancer patient versus as a control person is that control persons only donate samples to U-CAN at one occasion, whereas cancer patients are asked to donate samples at several occations over a longer period of time.
Questions concerning your U-CAN participation is primarily answered by the physician in charge of your treatment.