Lonneke van de Poll-Franse, PhD (Chair/principal investigator)

Trained as an epidemiologist (PhD) I was taught to traditionally use the Eindhoven Cancer Registry to evaluate the impact of new therapies on survival. In 2004 we initiated a quality of life pilot study among breast cancer survivors, using the cancer registry as a sampling frame. This was the beginning of a new research activity that laid the foundation of the current PROFILES registry.

In 2009 we received a Medium-Investment Grant from the Netherlands Organisation for Scientific Research (NWO) to build the PROFILES application. This allows us to assess patient reported outcomes in thousands of cancer survivors, up to years after diagnosis. Nowadays we combine the use of PROFILES and the Eindhoven Cancer Registry to evaluate the impact of (new) treatments not only on medical outcomes but also on patient reported outcomes!

Together with patients, oncology specialists and researchers from the Comprehensive Cancer Centre South and the Center of Research on Psychology in Somatic diseases (CoRPS) at Tilburg University we are currently following several large cohorts of cancer survivors. Different research questions that are posed by patients or doctors are or will be answered by means of the PROFILES data collection. I am personally very much interested in the impact of information provision on patient reported outcomes.

With a personal career development grant as well as a project grant from the Dutch Cancer Society (KWF Kankerbestrijding) we are currently conducting several observational studies as well as a randomized trial to evaluate the effect of different forms of information provision on perceived quality of care and quality of life. I am furthermore interested in the role of comorbidity in cancer survivorship, as more than one third of cancer survivors also has comorbid conditions at cancer diagnosis that are known to influence treatment and prognosis.

With a grant from the European Federation for the Study of Diabetes (EFSD) we will evaluate the combined effect of having diabetes and colorectal cancer on survival and patient reported outcomes. PROFILES offers us the opportunity to evaluate patient reported outcomes among thousands of cancer survivors and link them with high quality medical data as collected by the Eindhoven Cancer Registry.