May is PHTS Awareness Month!
Increased awareness for the PTEN Hamartoma Tumour Syndrome (PHTS) is very important, because many patients are not recognized yet and do not receive the care they need.
When you know that you have PHTS, it is possible for doctors to help you to prevent cancer development or to detect cancer at an early stage. More research is essential to optimize the recognition and care for PHTS patients.
PTEN Hamartoma Tumour Syndrome (PHTS) is a rare genetic tumour risk syndrome that is caused by a mistake in the gene PTEN. It was previously also known as Cowden Syndrome. PHTS can cause many different symptoms ranging from developmental delay to cancer. Also, symptoms vary a lot between patients.
Because PHTS is rare, organization of research in large groups of patients is difficult. The Radboud university medical centre in Nijmegen (the Netherlands) is one of the European PHTS expert centres and performs a lot of research on PHTS.
One of these research projects is a European study on clinical features, cancer risks, cancer prognoses and cancer treatment in individuals with PHTS: the INSPECT study. Doctors and patients all over Europe can contribute to the INSPECT study (www.pten.eu).
Are you diagnosed with PHTS? You are not alone! It is possible for patients or their representatives to participate in the INSPECT study. Participation requires completing a digital survey. Furthermore, permission is requested to retrieve and use your medical data in encrypted and secured form. Participation in the INSPECT study does not require an additional visit to the hospital. For more information or registration, feel free to visit the website: www.pten.eu.
Do you know someone with PHTS? Feel free to share this information with them or their representatives!
By working together, we can collect much information about this rare syndrome!