Floortje Mols, associate professor at Medical and Clinical Psychology (Tilburg University), is one of the board members of PROFILES. She has seen PROFILES grow into a large partnership between researchers from Tilburg University, the Netherlands Comprehesive Cancer Centre and hospitals from all over the Netherlands, since its beginning in 2014. PROFILES is a monitoring system for cancer patients and stands for 'Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship'. The study does research into the quality of life among people who have or had cancer. The aim is to find out more about the consequences of cancer for the lives of these (former) patients. The results of the research contribute to better (after)care for patients.
The PROFILES registry was set up with two NWO investment grants, the most recent within the framework of the ‘NWO-Groot’ research programme. PROFILES now has data from more than 25000 (former) cancer patients, who are sometimes followed shortly, and sometimes very long after diagnosis. The subsidy makes it possible to use innovative data collection methods, like ambulatory assessments (e.g. biosensors), blood sampling, online cognitive tests and online nutrition diaries.
Sharing data through the PROFILES registry
One of PROFILES’ unique strengths is that data is public and transparent. All cleaned pseudonymised data from the PROFILES registry is available for non-commercial scientific research (www.profilesregistry.nl).
Cooperation with medical doctors and hospitals is very intensive. Questions from daily clinical practice and questions from the patients themselves can be immediately followed up with research. Furthermore, PROFILES works as a team, across university and non-university institutions, with collaboration between different disciplines.