Dear colleagues!
As part of the genetic diagnosis, a cancer predisposition syndrome (CPS) has been diagnosed in you, your child or your patient. In August 2017, the Heidelberg Hopp Childhood Tumor Center and the Pediatric Hematology and the Oncology Hospital at Hanover Medical School collaborated to establish a cancer predisposition register, in which patients diagnosed with all types of cancer predisposition syndromes can be registered. It is therefore possible to register both: children and adults suffering from all diseases associated with an increased risk of cancer. Also, we ask you as a colleague to submit your patient in the register. You can find all important information about the Registry in our registration flyer (in german language). Thank you very much for your support!
About the Cancer Predisposition Syndrome Registry
Background of our Registry work
Cancer predisposition syndromes (CPS) are genetic diseases characterized by an increased risk of developing cancer. They affect approximately 10% of all children and adolescents with a malignant disease. We, a team of scientists and pediatric oncologists, want to improve the screening and therapy options for CPS patients through our work with this Registry.
To achieve this, we have set up this Internet site to provide physicians and affected patients with sound information about CPS. In addition, we have set up the Cancer Predisposition Registry to gain a better understanding of CPS.
The Cancer Predisposition Registry not only collects data and biological samples (blood and tumor samples), but also radiological images. The data is collected during initial examination and annual follow-up. Blood and tumor samples as well as radiological images are only forwarded to the Registry if they they are obtained or prepared as part of regular diagnostics or treatment for your medical care. In particular, we want to use the Registry to answer the following questions:
Execution
In contrast to therapy studies, the register does not encompass the management of patient treatment.
In order to avoid redundancy among the various structures, patients with syndromes for which pre-existing register activities (e.g. hereditary retinoblastoma, rhabdoid tumor predisposition, or syndromes leading to myelodysplastic syndromes or JMML) are performed, will not be re-registered or only be registered in the context of a closer collaboration.
Documentation is compiled using the XClinical company’s MARVIN software (a central data management system of the Pediatric Oncology and Hematology Association).
Recently, self-registration has also been available for patients and their parents or guardians. In this case, the information and registration is conducted directly by the Registry doctors in a personal or telephone conversation. You will find more detailed information on this in the download area further down on this page.
Inclusion criteria for the CPS Registry
The following criteria must be met to include a patient in the register:
You can find a questionnaire on our syndrome overview page for scientists and health professionals that will help you specify the reasons for suspecting a cancer predisposition syndrome if the diagnosis has not yet been confirmed. If your patient has been diagnosed with a specific tumor, our CPS-Navigator can help you narrow down the cancer predisposition syndromes associated with this tumor. Not only children and adolescents but also adults can be included in our international CPS Registry. You will find more instructions and all necessary documents for the registration process below.
Registration in the CPS-Registry by the treating physician
How to register your patient in the Registry:
Registration in the CPS-Registry by self-registration
How to registrate yourself or your child in the CPS-Registry:
Downloads
Here you will find the complete protocol of the CPS-Registry with detailed information on the background, objectives, structure and procedure as well as patient inclusion criteria of the Registry. In addition, age-appropriate patient information and consent forms are available in English and German. Please note that different versions of information and consent forms must be used for registration by the treating doctor or for self-registration.
Registration by the treating physician
Please always send blood or tumor samples together with the delivery form. You will find the address at the top of this page and on the delivery form.
Self-registration
Please always send blood or tumor samples together with the delivery form. You will find the address at the top of this page and on the delivery form.