CPS Registry

Author:  Julia Dobke, Last modification: 2024/05/22 https://kinderkrebsinfo.de/doi/e200027

CPS Registry

Cancer Predisposition Syndrome Registry (CPS Registry)

Disease

Cancer Predisposition Syndromes (CPS)

Type

retrospective and prospective registry

Rationale / Objectives

Over 50 hereditary diseases are known to be associated with an increased risk of cancer. For many of these diseases, little is known about the specific cancer risk. For some diseases, it seems to make sense to carry out early detection tests due to the high cancer risk. However, little is known about the benefits of these examinations. In addition, the hereditary basis of cancer development and the changes in the tumor cells of those affected have not yet been sufficiently researched.

It can be assumed that a significant proportion of all patients with cancer develop the disease due to a genetic predisposition. There are various unanswered questions for patients with cancer predisposition syndromes:

  • What are the benefits of early detection as recommended by experts?
  • Are there correlations between genotype and phenotype ?
  • What are the cancer risks across different age groups?
  • What is the prognosis fpr cancer in patients with a genetic cancer predisposition?
  • What specific side effects of therapy are experienced?
  • How can the treatment of individuals with a cancer predisposition be improved?
  • What biological processes lead to the development of cancer?
Therapy / Study arms

This is a mere observational study. The following data will be collected in the registry to learn more about people with this group of diseases:

  • medical information
  • radiology images
  • genetic findings
  • blood samples and, if necessary, bone marrow and tissue samples from people with a hereditary predisposition to cancer.

Since this is a long-term observation that also monitors the course of a disease, the duration of the study is unlimited. The results of any necessary follow-up examinations are forwarded to the registry as well.

Inclusion Criteria
  • Adult participants: Written consent for participation in the register
  • Children and adolescents: Written consent of the legal guardian and, if possible, also of the participant
  • Once included participants turn 18 years of age, they must be contacted and confirm their consent to continue participating in the registry in writing
  • Confirmed diagnosis of Li-Fraumenii syndrome or another cancer predisposition syndrome
  • Suspected diagnosis of Li-Fraumenii syndrome or other cancer predisposition syndrome (without age restriction)
Recruitment ca. 100 per year
Status since August 2017
Principal Investigator Prof. Dr. med. C. Kratz, Prof. Dr. med. S. Pfister
E-Mail KPS-Register@mh-hannover.de
URL https://www.krebs-praedisposition.de/en/cps-research/cps-registry/
Contact

Principal Investigators

Prof. Dr. med. Christian P. Kratz Medizinische Hochschule Hannover Klinik für Pädiatrische Onkologie und Hämatologie OE 6780 Carl-Neuberg-Str. 1 30625 Hannover Telefon +49 (511) 532 6711 Fax +49 (511) 532 161026 kratz.christian@mh-hannover.de

Prof. Dr. med. Stefan Pfister Deutsches Krebsforschungszentrum Neuroonkologie, Technologiepark 3 Im Neuenheimer Feld 580 69120 Heidelberg Telefon +49 (6221) 42 4617 Fax +49 (6221) 42 4639 s.pfister@dkfz.de

Trial Coordination

Christina M. Dutzmann Medizinische Hochschule Hannover Pädiatrische Hämatologie und Onkologie Carl-Neuberg-Str. 1 30625 Hannover Telefon 0049 (511) 532 6738 Fax 0049 (511) 532 161026 Dutzmann.Christina@mh-hannover.de

Datenmanagement

Birte Sänger Medizinische Hochschule Hannover Klinik für Pädiatrische Onkologie und Hämatologie, OE 6780 Carl-Neuberg-Str. 1 30625 Hannover Telefon +49 (511) 532 9408 Fax +49 (511) 532 161026 KPS-Register@mh-hannover.de

Beatrice Hoffmann Medizinische Hochschule Hannover Klinik für Pädiatrische Onkologie und Hämatologie, OE 6780 Carl-Neuberg-Str. 1 30625 Hannover Telefon +49 (511) 532 9408 Fax +49 (511) 532 161026 KPS-Register@mh-hannover.de

Participants GPOH centres, attending physicians, patients through self-registration
Sponsoring CPS registry: Deutsche Kinderkrebsstiftung
ADDRess: BMBF