European registry of patients with hereditary tumour predisposition syndromes operating within ERN GENTURIS

The GENTURIS registry is a European registry for individuals with hereditary tumour predisposition syndromes or for persons in whom such a syndrome is reasonably suspected. Hereditary tumour predisposition syndromes are rare, so collecting data from a larger number of patients across different European centres is important for better understanding these conditions. The collected data may contribute to better knowledge of the diseases and to improved diagnosis, surveillance, prevention and management of patients and their families.

Purpose of the registry

The purpose of the registry is to collect standardised health and genetic data, obtained as part of usual healthcare, on patients with hereditary predisposition to tumour development or suspected predisposition. This will enable research at the European level, generate new knowledge and support the development of better and more consistent management of patients with rare hereditary tumour predisposition syndromes.

Inclusion procedure

If an individual decides to participate, they receive all necessary information and sign an informed consent form.

The registry includes data obtained as part of usual healthcare, primarily in the Oncology Genetic Counselling Clinic. Inclusion in the registry does not affect treatment and does not require additional medical procedures.

Data are submitted to the European registry in pseudonymised form, meaning that they are not directly linked to the individual’s identity. Data processing is carried out in accordance with applicable personal data protection legislation.

Who can take part?

The registry may include:

• individuals with a confirmed hereditary predisposition to tumour development,
• individuals with a pathogenic or likely pathogenic variant in a gene associated with hereditary cancer,
• individuals in whom there is reasonable suspicion of genetic predisposition to hereditary cancer.

How to apply?

The individual will be informed about the possibility of inclusion by a physician or clinical genetics specialist as part of care at the Oncology Genetic Counselling Clinic.

Participation is voluntary and may be withdrawn at any time without affecting further healthcare.

The registry/study is conducted in accordance with approval from the competent ethics committee. For additional information, please contact your treating physician or the study staff by email: [email protected].