Cancer predisposition syndromes (CPS) are hereditary genetic disorders that are associated with an increased risk of cancer. They are the most common known cause of cancer in childhood and adolescence.
About ten percent of all children and adolescents with cancer are affected by hereditary predisposition. In most cases, it is inherited, but can also arise spontaneously in the genome. One of the most common CPS, for example, is the Li-Fraumeni syndrome. Affected people are at very high risk of developing cancer during the first half of their lives.
Genetic cancer predisposition has significant implications: Screenings and treatments accompany affected individuals throughout their entire lives. Often several family members have this predisposition. This can bring both physical and mental stress.
With the "FIT" cooperation, scientists and children's oncologists at the KiTZ and the Hannover Medical School have been working towards promoting research, information and therapy (Forschung, Information, Therapie) in this area and thus to improve the situation of those affected since 2017. Leads are Professor Christian Kratz of the Hannover Medical School and KiTZ Director Professor Stefan Pfister.
The magazine "WIR" of the German Childhood Cancer Foundation (Deutsche Kinderkrebsstiftung) reports extensively on cancer predisposition syndromes in its current issue (2/2019). The journal is available in the archive of the Children's Cancer Foundation (only in German):
Internet platform provides register as well as information for patients and doctors
With the financial support of the German Childhood Cancer Foundation (Deutsche Kinderkrebsstiftung), the teams in Heidelberg and Hannover were able to realize the website www.krebs-praedisposition.de – an online offer for affected people, doctors and interested public. On the one hand, it reports on current research results, patient events and the work of patient organizations. On the other hand, it is an information platform that provides detailed knowledge of the most common CPS. And not just for doctors and scientists, but also in an easy-to-understand form for patients and their families. It also provides links to self-help groups and local experts. As the website is also available in English, patients and doctors from abroad also benefit from this online offer.
The platform also provides information on the cancer predisposition syndrome (CPS) registry. Christian Kratz and Stefan Pfister have established this registry to gain more knowledge about CPS. The CPS registry collects data, radiological images and biomaterials (blood and tumor material) from persons with proven CPS or suspicion.
Both children and adults can be included in the registry. The goal is to improve early detection options as well as care and treatment of affected individuals.
For more about the registry and the registration process see: www.krebs-praedisposition.de/en/registries/cps-registry/