CPS
Registry

Fanconi Anemia
Registry

Liquid Biopsy

ADDRess

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:

  • What is the benefit of the screening recommended by experts?

  • Are there genotype-phenotype correlations?

  • How high is the risk of cancer for different age ranges?

  • What are the biological processes that result in cancer developing in cases of CPS?

  • What is the malignant disease prognosis for patients with a genetic predisposition to cancer?

  • What specific side effects occur because of treatment?

  • How can the treatment of people with a cancer predisposition be improved?

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:

  • Proven cancer predisposition syndrome
    OR
    high-level suspicion of a cancer predisposition syndrome

  • Signed declaration(s) of informed consent

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:

  • Fill in the information sheet and hand out a copy to the patient and/or any guardian. It does not need to be signed by the patient/guardian.

  • Please hand out the age-appropriate information to the patient and, if applicable, to the person with custody. This remains without signature with the patient/guardian

  • Please hand out the age-appropriate informed consent to the patient and, if applicable, to the person with custody. This must be signed by the patient and, if applicable, the person with custody and the physician providing the information.

  • Please fill out the sheet for the initial registration.

  • Then send us the sheet for initial registration, including all relevant letters from physicians and medical reports, as well as any biological samples and radiological images to the following address:

    Medizinische Hochschule Hannover
    Klinik für Pädiatrische Hämatologie und Onkologie
    LFS-KPS-Register
    Prof. Dr. med. Christian Kratz
    OE 6780
    Carl-Neuberg-Str. 1
    D-30625 Hanover
    Germany

  • After that, please fill out the sheet for follow-ups at annual intervals and send it to the address mentioned above.

  • If the patient has already been entered into another register or study because of his or her malignant disease, please include a brief note to inform us.

Registration in the CPS-Registry by self-registration

How to registrate yourself or your child in the CPS-Registry:

  • Please contact us to initiate the participation.

  • Please read the age-appropriate information carefully.

  • Please also read the age-appropriate informed consent carefully.

  • The information for the CPS-registry will then be given in a personal or telephone conversation with a physician from the CPS-registry team. During this conversation we will explain the contents, questions and procedures of the project and answer your questions.

  • After the interview we will send you the informed consent already signed by the physician in duplicate. Please complete it with your name, place and date and sign it.

  • Please send us a version of the completed and signed informed consent together with all relevant physician’s letters and medical findings as well as radiological images (CDs and findings) to the following address:

    Medizinische Hochschule Hannover
    Klinik für Pädiatrische Hämatologie und Onkologie, OE 6780
    KPS-Register
    Carl-Neuberg-Straße 1
    D-30625 Hannover, Germany

  • We will fill out the initial registration form based on your physician’s letters and findings.

  • If you also would like to provide blood, bone marrow or tumor tissue samples, we will be happy to send you the necessary materials. We will also discuss this with you in the conversation. If a doctor has already taken blood for the CPS-registry, please send it with the delivery form to the address mentioned above. The delivery form is given in german language.

  • In order to be able to fill out the annual follow-up form, we may contact you again to request current physician’s letters and findings from you.

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

zur deutschen Registerseite mit allen Unterlagen
Registry Protocol
We recommend that your local ethics committee review the registry protocol.

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

Contact form (german language)
+49 511 532-9408 oder -6738
+49 511 532-161026
PAO.LFS-CPS@mh-hannover.de
Due to the current corona crisis, you can contact us by e-mail or via our contact form. Thank you for your understanding!

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.