Dear families, dear colleagues,
We welcome you on our website for the Cancer Predisposition Syndrome Registry. Cancer predisposition syndromes (CPS) are genetic conditions associated with an increased cancer risk. CPS are especially relevant for children and adolescents with cancer. We are a team of scientists and pediatric oncologists. It is our aim to advance CPS research, together with affected individuals and their families other scientists and health professionals: through Facts, Investigation, and Therapy.
Here on our website, we concisely review CPS relevant for children, including the medical background and therapeutic measures, for families affected by a CPS and for health professionals. You will also find links to support groups and relevant articles.
We would like to learn more about the cancer risks in individuals affected by a CPS and about the biology underlying cancer development in these patients. We also would like to collect data on the benefit of cancer surveillance. Therefore, we have launched a CPS registry.
We are just beginning to understand the urgent need of better cancer therapies for individuals with CPS. Therefore, it is important to further advance cancer therapies for CPS patients. We are promoting this process though our own research and by collaborating with the various childhood cancer study groups of the Society of Pediatric Oncology and Hematology.
We are just beginning to understand the important role of CPS, especially in children affected by cancer. We would like to accelerate this process. In case you have questions related to CPS or if you wish to support our work, we are looking forward to receiving your message!
Christian P. Kratz, MD Stefan M. Pfister, MD
Our research projects
Genetic cancer predisposition is the most important known cause of childhood cancer. By launching the CPS-Registry, we would like to
define the cancer risks associated with CPS
investigate the mechanisms of cancer development in CPS patients
examine, if cancer surveillance improves the health of affected individuals.
We please you to support our work by reporting your patients to our registries as a treating physician. The CPS registry is open for all known cancer predisposition syndromes. Both children and adults can be registered.
About us – our teams in Hannover and Heidelberg
Hannover
| +49 511 532-6712 | |
| +49 511 532-9120 | |
| Kratz.Christian@mh-hannover.de | |
| Department of Paediatric Haematology and Oncology at Hannover Medical School (MHH) |
Heidelberg
| +49 6221 42-4617 | |
| +49 6221 42-4639 | |
| s.pfister@kitz-heidelberg.de | |
| “Hopp Children’s Cancer Center at NCT Heidelberg (KiTZ)” |
News about our scientific work
Incorrect fax number in our current consent and information documents
On our current consent and information documents, we have made a mistake regarding the fax number. We apologize very much for this circumstance! The incorrect fax number does not exist, so that no data protection problems will arise for you or your patients.
Start of the “Liquid Biopsy” project
Based on the Cancer Predisposition Syndrome Registry, the Liquid Biopsy project is now starting. The aim is to detect small DNA fragments of tumor cells in the blood. In the future, this will enable the early and least invasive detection of the development and process of malignant diseases.
Integration of FAR01 in LFS-CPS-R01
The Fanconi Anaemia Registry has been affiliated to the Cancer Predisposition Syndrome Registry since January 2020. This has significantly simplified the administrative structures. However, this does not change anything for the registered patients. A click on the picture above will take you to further information about the affiliation.
Competence in clinic and science
CPS-Outpatient clinic
If you or your child has been diagnosed with a cancer predisposition syndrome (CPS), you are welcome to come to our CPS-Outpatient clinic; especially if such an offer is not available in your area. Please ask your attending physicians in this regard.
To make an appointment with us, simply fill out the registration form and send it to us. We will contact you as soon as possible.
Registration at the CPS-Outpatient clinic
| KPS-Ambulanz Department of Paediatric Haematology and Oncology Hannover Medical School D-30625 Hannover, Germany |
|
| +49 511 532-9037 (on workdays from 12 o’clock) | |
| +49 511 532-8766 | |
| PAO.LFS-CPS@mh-hannover.de | |
| Due to the Corona crisis we can currently only offer limited dates. We thank you for your understanding! |
| Contact form (german language) | |
| Simply download and fill out digitally. If you are unable to print out the form, please contact us at the number given above. |
Research
Since 2017 we have been conducting the Registry for people with CPS. We are investigating questions relating to the development of cancer and asserving biospecimen. In this way, we create a resource that allows us to answer basic scientific questions. All information about our CPS-Registry, the Fanconi Anemia Registry and the two accompanying projects “Liquid Biopsy” and “ADDRess” can be found under the following links.
Further information
| KPS-Register Department of Paediatric Haematology and Oncology Hannover Medical School D-30625 Hannover, Germany |
|
| +49 511 532-9408 oder -6738 | |
| +49 511 532-161026 | |
| PAO.LFS-CPS@mh-hannover.de | |
| Due to the Corona crisis, you can best contact us by e-mail. Thank you for your understanding! |
Recent publications about CPS
This article, published in the magazine “Cancer”, reports on the psychosocial effects, as well as the feasibility and acceptance of early detection strategies in patients with Li-Fraumeni syndrome. A click on the publication title leads you directly to the article. |
This article, published in “Nature” magazine, reports on a novel cancer predisposition gene associated with SHH medulloblastomas (SHH-MB). Furthermore, new findings on the tumor genome and the protein balance of SHH-MB are presented and discussed with regard to the mechanisms of cancer development. A click on the publication title leads you directly to the article. |
This article, published in the “British Journal of Cancer”, analyses the incidence of cancer in children with Beckwith-Wiedemann spectrum and quantifies the cancer risk, especially with regard to genetic variants, for those affected. A click on the publication title leads you directly to the article. |
This article, published in the Journal “Cancer Cytopathology”, reports on the diagnostic accuracy of brush biopsy-based cytology of suspicious lesions in the oral cavity in patients with Fanconi Anemia. This less invasive method for the early detection of squamous cell carcinomas was described. A click on the publication title leads you directly to the article. |
This article published in the journal “Der Pathologe” gives an update on the Li-Fraumeni syndrome. It highlights new findings and recommendations regarding treatment und surveillance strategies and gives an outline. Furthermore, the Cancer Predisposition Syndrome Registry is presented. A click on the publication title leads you directly to the article. |
This article, published in the “Journal of Clinical Oncology”, reports about the cancer risk of DICER1 mutations and lists recommendations for genetic counseling. A click on the publication title takes you directly to the article. |
In this article, published in the Journal of Medical Genetics, guidelines for the diagnosis of constitutional mismatch repair-deficiency syndrome (CMMD) as differential diagnosis of neurofibromatosis type 1 were published. A click on the publication title takes you directly to the article. |
In this letter-to-the-editor article, published in the journal “Haematologica”, TP53, ETV6 and RUNX1 genes were analyzed to characterize their potential impact on second neoplasia development after ALL therapy in childhood. A click on the publication title takes you directly to the article. |
This article, published in the Journal of Clinical Oncology, reports on a novel gene mutation, GPR161, which predisposes to medulloblastomas. It has been described that this mutation is associated with an increased risk of MB SHH tumors in infants. A click on the publication title leads you directly to the article. |