The Cancer Predisposition Syndrome Registry (CPS Registry)

In August 2017, the Research Registry for Cancer Predisposition Syndromes (CPS Registry) was launched in collaboration with the Department of Pediatric Hematology and Oncology at Hannover Medical School and the Hopp Children’s Tumor Center (KiTZ) in Heidelberg.

The CPS Registry aims to deepen our understanding of cancer predisposition syndromes, disseminate knowledge about CPS to healthcare professionals and affected individuals, and enhance medical and psychosocial care for those with CPS.

Later in this section, you can learn in detail about how the CPS register operates and its scientific objectives. All documents necessary for registration are available in our download area. The most important links are conveniently located in the following info box. If you have any questions about the CPS Registry or patient registration, please don’t hesitate to contact us.

Later in this section, you can learn in detail about how the CPS register operates and its scientific objectives. All documents necessary for registration are available in our download area. The most important links are conveniently located in the following info box. If you have any questions about the CPS Registry or patient registration, please don’t hesitate to contact us.

Background Information on Our Registry Work

Cancer Predisposition Syndromes (CPS) are genetic conditions associated with an increased risk of cancer. Approximately 10% of all children and adolescents with cancer are affected by CPS. Our team of scientists and pediatric oncologists is dedicated to enhancing early detection and treatment options for individuals with CPS through our registry work.

The CPS registry collects data, biomaterials (such as blood and tumor samples), and radiological images. This information is gathered during the initial assessment and through annual follow-ups. Blood and tumor samples, as well as radiological images, are included in the registry only if they are already obtained as part of routine diagnostics or treatment.

Our primary objectives with the registry are to address the following questions:

  • What are the benefits of early detection recommended by experts?
  • Are there correlations between specific genotypes and phenotypes?
  • What are the cancer risks across different age groups?
  • What are the underlying biological processes leading to cancer development in CPS?
  • What are the prognoses for cancer in individuals with a genetic predisposition?
  • What are the specific therapy-related side effects?
  • How can we enhance treatment for individuals predisposed to cancer?

Inclusion Criteria

The following criteria must be met for inclusion in the register:

  • Proven cancer predisposition syndrome
    OR
    highly suspected cancer predisposition syndrome
  • Signed declaration(s) of consent

Explore our syndrome overview page tailored for doctors, featuring a questionnaire designed to substantiate suspicions of a cancer predisposition syndrome, especially when a confirmed diagnosis is unavailable.

If your patient has received a specific tumor diagnosis, our CPS Navigator tool can assist you in narrowing down potential cancer predisposition syndromes associated with this tumor.

Our international CPS registry welcomes participants of all ages – children, adolescents, and adults. Below, you’ll discover additional information and all necessary documents for registration.

Implementation

Unlike in therapy studies, treatment management is not governed by the registry.

To prevent redundancy, syndromes with existing registry activities (e.g., hereditary retinoblastoma, rhabdoid tumor predisposition, or syndromes leading to myelodysplastic syndromes or JMML) aren’t registered again, or only after close consultation.

Documentation is facilitated through the MARVIN software, the central data management system of the Society for Pediatric Oncology and Hematology, provided by XClinical. Centers documenting in MARVIN themselves can utilize a FAX registration option. Further details are available under Patient Registration.

Self-registration is now open to patients and parents. In this case, information and registration are conducted directly through registry doctors in a personal or telephone conversation. More information is available in the download area below.

Patient Registration in the CPS Registry

We are delighted when individuals with CPS choose to join our registry. There are two ways to do so:

As the attending physician, you register your patient with us in the CPS registry.

As the attending physician, you register your patient with us in the CPS registry.

Typically, the attending physician is responsible for registering CPS patients. We provide detailed information on how this registration process works on the “Patient Registration” page. Clicking on this info box will take you there directly.

As a patient, you register yourself with us in the CPS registry.

As a patient, you register yourself with us in the CPS registry.

If the attending physician is unable to register for the registry, CPS patients can also opt for self-registration. All further information on this can be found on the “CPS Research – Get Involved” page. Clicking on this info box will take you directly there.

The CPS Registry Team

  • Christina Dutzmann
    Christina Dutzmann
    Ärztin in der KPS-Ambulanz und im KPS-Register
    Ärztin in der KPS-Ambulanz und im KPS-Register
  • Beatrice Hoffmann
    Beatrice Hoffmann
    Studienassistenz, Patientensupport
    Studienassistenz, Patientensupport
  • Anja Karow
    Anja Karow
    Projektmanagerin ADDRess
    Projektmanagerin ADDRess
  • Lucas Müntnich
    Lucas Müntnich
    Arzt in der KPS-Ambulanz und im KPS-Register
    Arzt in der KPS-Ambulanz und im KPS-Register
  • Christina Reimer
    Christina Reimer
    Biologisch technische Assistentin
    Biologisch technische Assistentin
  • Birte Sänger
    Birte Sänger
    Studienassistenz, Patientensupport
    Studienassistenz, Patientensupport
  • Prof. Dr. med. Christian Kratz
    Prof. Dr. med. Christian Kratz
    Head of the CPS outpatient department and the CPS Registry
    Head of the CPS outpatient department and the CPS Registry
  • Christina Dutzmann
    Christina Dutzmann
    Ärztin in der KPS-Ambulanz und im KPS-Register
    Ärztin in der KPS-Ambulanz und im KPS-Register
  • Beatrice Hoffmann
    Beatrice Hoffmann
    Studienassistenz, Patientensupport
    Studienassistenz, Patientensupport
  • Anja Karow
    Anja Karow
    Projektmanagerin ADDRess
    Projektmanagerin ADDRess
  • Lucas Müntnich
    Lucas Müntnich
    Arzt in der KPS-Ambulanz und im KPS-Register
    Arzt in der KPS-Ambulanz und im KPS-Register
  • Christina Reimer
    Christina Reimer
    Biologisch technische Assistentin
    Biologisch technische Assistentin
  • Birte Sänger
    Birte Sänger
    Studienassistenz, Patientensupport
    Studienassistenz, Patientensupport
  • Prof. Dr. med. Christian Kratz
    Prof. Dr. med. Christian Kratz
    Head of the CPS outpatient department and the CPS Registry
    Head of the CPS outpatient department and the CPS Registry