The patient takes centre stage in the research studies by KNEP. A dedicated patient representative ensures the best possible interaction between patients and researchers. Anne Marit Rødland, patient representative in the steering group of KNEP, Chairman of the Board of the Norwegian Pancreatic Cancer Network, Norway’s patient and advocacy group for pancreatic cancer and member organization of the Norwegian Cancer Society.
Through patient representation, KNEP will respect the patients’ interest, organize meetings for patients and their relatives, and provide information regarding pancreatic cancer and KNEP's research results to the general public.
Following the patient’s written consent to participate in one or several of the studies included in this project, personal and medical data have been collected and may be exchanged between researchers who are part of the KNEP consortium.
Data are stored and exchanged within the consortium via TSD, the Service for Sensitive Data, a system that has been developed and is run by the University of Oslo. It is part of NorStore, a national infrastructure for the storage and handling of research data.
Data that are stored include gender, date of birth, information about health, disease, and treatment as well as data that result from the analysis of blood and tissue samples that were taken and stored in a dedicated research biobank.
The data will be pseudonymized, such that researchers who work with these data are not able to identify the individual participating patient. Only the primary investigator of the study can link personal and research data to the individual patient.
As a participating patient, you have the right to view the information that is stored on your person, to correct any incorrect or incomplete data, or to delete information. You also have the right to object to the sharing of data with other research groups within the KNEP consortium. Participating patients who wish to view information stored on their person or who have queries regarding the handling of data are advised to contact the researcher who is stated in the consent document. Alternatively, the project leader of the KNEP consortium can be contacted: Caroline Verbeke, c.s.verbeke@medisin.uio.no, telephone 230 71 498.