Hereditary cancer portal launched in Portugal
The Working Group dedicated to Hereditary Cancer from the Portuguese Society of Oncology (SPO) recently launched the National Program on Genetics and Cancer (PROGO) and an informative and educational portal on hereditary cancer in Portugal. These initiatives are the result of a collaboration with the European Reference Network on Genetic Syndromes linked to cancer (ERN-GENTURIS), coordinated in Portugal by i3S researcher Carla Oliveira. PROGO’s main objective is to standardize the clinical practice of genetic diagnosis and ensure universal care for patients and carriers with hereditary cancer syndromes, through the publication of the minimum requirements for genetic testing, as well as the guidelines for action for each hereditary syndrome. The program will also have a training component aimed at non-genetic doctors (“e-learning”) in order to “strengthen specific skills”.
This information is available on the portal, where there is also information aimed at patients and family members aimed to increase the population’s literacy in family cancer predisposition syndromes and enhance the users’ ability to participate in their therapeutic process. This new program will allow Portugal to be better integrated into the European Reference Network. “We are working in conjunction with the European Reference Network on Genetic Syndromes linked to cancer (ERN-GENTURIS), and this portal will serve as a platform for the dissemination of the most recent guidelines, including those developed and accepted at the European level”, explains the National Coordinator of the European Reference Network, Carla Oliveira, i3S researcher and member of the SPO Working Group dedicated to Hereditary Cancer.
Together with PROGO and the portal, the team also created an annual prize of 25 thousand euros with the aim of encouraging research in the area of Hereditary Cancer. The winner of this prize will be announced at the Annual Congress of the Portuguese Society of Oncology in November.
“Given the growing importance of hereditary cancer in the daily lives of patients and families, we understood there was a need to define clinical standards and standardize practices in terms of referral, diagnosis and prophylactic approach! We want to improve clinical practice, offer genetic diagnosis to all qualified cancer patients, and define processes for the approach of asymptomatic patients and carriers, and contribute to literacy by facilitating access to information for the entire population”, says Gabriela Sousa, Coordinator of the Working Group.
“Genetic testing can provide important information about the cause of cancer, information that will have an impact on treatment decisions”, explains researcher Carla Oliveira. In addition, she continues, genetic testing could also “help healthy relatives of cancer patients know the chances of having the disease and give them the opportunity to decide to adopt risk-reducing measures”.
Created in 2019, the Hereditary Cancer Working Group focuses on four of the main hereditary cancer syndromes: hereditary breast/ovarian cancer syndrome (HBOC), hereditary non-polypoid colorectal cancer syndrome (Lynch Syndrome), hereditary diffuse gastric cancer (HDGC) and Li-Fraumeni syndrome. The Working Group brings together national experts and representatives of various Scientific Societies, a representative of the European Network (ERN-GENTURIS), as well as representatives of patients and their families (EVITA).