PHTS is granted an International Classification of Diseases (ICD) Code! - Click here for more information.
Lead researcher: Professor Nicoline Hoogerbrugge, MD PhD
Institution: Radboud University Medical Centre, Nijmegen, Netherlands
Type of research: Study of people with PHTS – cancer outcomes
People with PHTS are at high risk of several cancers, such as thyroid, and for females, breast and endometrial cancer. Currently most people with PHTS related cancer receive the same treatment as people with the same type of cancer who do not have PHTS. However, there is some evidence to suggest that PHTS-related cancers may be better treated using a more personalised treatment approach.
As a first step to identifying better treatment options for PHTS-related cancer, we need a more detailed understanding of how different cancers develop over time in people with PHTS, how they are currently being treated, how they are responding to these treatments, and how factors such as age at diagnosis of cancer might affect the outcome.
Professor Hoogerbrugge was the lead researcher for an earlier project funded by PTEN Research, which established a study group of hundreds of people with PHTS from across Europe. These individuals volunteered to allow access to their medical records and to complete questionnaires to help Professor Hoogerbrugge and her team better understand the natural history of PHTS. If you are interested in participating in this study, please visit the INSPECT study website for more information.
From a sub-group of these individuals who have had a diagnosis of cancer, we will collect detailed information on all aspects of their cancer diagnosis, tumour type and treatment.