Our vision builds on a partnership between patients, caregiver organizations and researchers. We aim to create value for all stake holders through a joint investment in sample collection and patient data analysis. From a patient perspective, the program provides a thorough clinical assessment and contributes to new knowledge and improved future care. The caregiver organization receives research support and rapid access to new scientific knowledge. The researcher finally, gets access to valuable clinical data and support in the research process.
In our model, support functions are centralized and stakeholders keep an open dialogue to harmonize work processes in sample collection and handling. Centralized support functions include:
- Construction and maintenance of research databases
- Protocols for sample collection and data management
- Storage of biological samples in a biobank
- Support for utilization of research results