The INSPECT study is carried out by a core team of medical doctors and researchers who work at the Department of Human Genetics of the Radboud University Medical Center (Radboudumc) in Nijmegen, the Netherlands.
This hospital is a center of expertise for PHTS. This means that there work many people with a lot of knowledge about PHTS at the Radboudumc. For example, about how to recognize and diagnose PHTS and about the monitoring and treatment of PHTS patients. From all over the Netherlands, PHTS patients are being referred to the Radboudumc.
Prof. dr. Nicoline Hoogerbrugge is an internist-oncogeneticist. This means that she is specialized in cancer, genes and heredity. Most adult PHTS patients of the Radboudumc visit her for an annual check-up. As a professor in hereditary cancer she also does a lot of research.
Dr. Janet Vos is an epidemiologist. An epidemiologist tries to find patterns in diseases. For example: how often does a disease occur? In whom? How often do which symptoms occur?
She has set up the INSPECT study together with Prof. dr. Nicoline Hoogerbrugge, and Janet Vos coordinates the study. Once all data have been collected, she will review and analyze the data.
|Dr. Janneke Schuurs-Hoeijmakers is a clinical geneticist. This means that as a doctor she sees people with a hereditary disorder, or with the question if there is a hereditary disorder. If the question is whether someone has PHTS, they first visit her for a consultation. She then discusses the symptoms and finds out if a DNA test is necessary.|
Katja Verbeek is data manager of the INSPECT study. She collects all incoming data in a database and sends the surveys to participants. This data comes, for example, from surveys filled in by patients, but also from doctors. By building this database, she helps the researchers to analyze the data.
Linda Hendricks has a background in biomedical sciences. She will investigate the risks of cancer and the cancer prognoses in PHTS patients. For this she will also use the information of the INSPECT study.
Meggie Drissen has a background in biomedical sciences. She will investigate the clinical features of PHTS, so PHTS can eventually be recognized better. She will also investigate which care is most appropriate when a patient has been diagnosed with PHTS.
Ane Jordan Schei-Andersen grew up in Norway and studied human movement science. Her research focuses on easy-to-apply clinical criteria that can be used by healthcare providers to recognize PHTS.
The core team works together with medical doctors and researchers from other hospitals in various countries.
‘European Reference Network on Genetic Tumour Risk Syndromes’ (ERN GENTURIS). This network consists of European doctors who work at centers specialized in rare genetic diseases and hereditary cancer syndromes, such as PHTS.
Several centers from ERN GENTURIS and collaborating centers are participating in the INSPECT study.
Several centers from ERN GENTURIS and centers with which they collaborate participate in the INSPECT study.
Several centers from European countries are currently participating in the study. These centers are indicated with a blue location symbol on the map below.