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ADDRess

Dear patients, dear parents!
Dear colleagues!

You, your child or patient have been diagnosed with a DNA repair defect? In order to gain more comprehensive knowledge about these so-called Disorders with Abnormal DNA Damage Response (DADDR) and to treat patients with these diseases more adequately, the joint project “ADDRess” was established.

Nine groups have joined forces to improve medical and psychosocial care, early cancer detection, diagnostics and therapy for people with impaired DNA repair. The ADDRess research project is based on the cancer predisposition syndrome (CPS) register and is funded by the Federal Ministry of Education and Research.

All information about participation in the project can be found below.

Many thanks for your valuable support!
Your ADDRess research team.

About the ADDRess project

Background of the ADDRess project

Disorders with Abnormal DNA Damage Response (DADDR) are rare genetic diseases with limited DNA repair. A common feature of patients with those underlying genetic disorders is a greatly increased risk of cancer. The treatment is usually complicated due to the existing genetic defects. If these patients are treated with analogue radiation or chemotherapy strategies, they can suffer from increased side effects and intolerances, secondary tumors and poor treatment success, comparing to patients with cancer without underlying DNA repair defects. The improvement of treatment strategies is therefore urgently needed.

ADDRess is a consortium with the aim of developing a translational research approach involving patient representatives, physicians from different disciplines and scientists to improve medical and psychosocial care, cancer monitoring, diagnosis and therapy of people with DNA repair disorders.

Our research project pursues the following goals:

  • We want to create an infrastructure that facilitates the exchange of information, the coordination of consultation and the entry of medical patient data for both patients and medical professionals. In addition, the overall coordination of the network will take place here.
    (Subproject 1, Hannover) Information flyer (german language)

  • We want to study the molecular causes of diseases with DNA repair defects.
    (Subproject 2, Würzburg)

  • We want to support evidence-based psychosocial care.
    (Subproject 3, Heidelberg) Information flyer (german language)

  • We want to improve the early detection of cancer through MRT imaging.
    (Subproject 4, Heidelberg) Information flyer (german language)

  • We want to identify cancer treatment targets and improve the diagnosis of cancer by studying genetic characteristics in patients with DNA repair defects.
    (Subprojects 5-8, Düsseldorf, Hannover, Heidelberg)

  • We want to create preclinical models to search for new therapies for patients with DNA-repair-defect-associated cancer that can be tested in early clinical trials.
    (Subproject 9, Heidelberg)

The ADDRess project is funded by the Federal Ministry of Education and Research.

The consortium

If you have any questions regarding a specific subproject, please do not hesitate to contact us. Here you can find the contact details of all project managers.

Prof. Dr. Christian Kratz

Subproject 1 – Coordination of the consortium

+49 511 532-6711
+49 511 532-161026
Sent email
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Dr. Reinhard Kalb

Subproject 2 – Gene identification and functional analyses

+49 931 31-84361
+49 931 31-84069
Sent email
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PD Dr. Imad Maatouk

Subproject 3.1 – Psychosocial  research

+49 6221 56-37585
+49 6221 56-5250
Sent email
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Prof. Dr. Sarah Schott

Subproject 3.2 – Psychosocial research

+49 6221 56-37022
+49 6221 56-33713
Sent email
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Prof. Dr. Heinz-Peter Schlemmer

Subproject 4 – Imaging

+49 6221 42-2563
+49 6221 42-2567
Sent email
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Dr. Martin Schramm

Subproject 5 – Oral cancer
screening

+49 211 81-18346
+49 211 81-18402
Sent email
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Prof. Dr. Gudrun Göhring

Subproject 6 – Clonal evolution in haematological neoplasia

+49 511 532-4517
+49 511 532-4521
Sent email
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Prof. Dr. Felicitas Thol

Subproject 7 – Clonal evolution in patients with DNA repair defects

+49 511 532-4018
+49 511 532-4146
Sent email
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Prof. Dr. Stefan Pfister

Subproject 8 – Genetic and epigenetic profiling

+49 6221 42-4617
+49 6221 42-4639
Sent email
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PD Dr. Till Milde

Subproject 9 – Development of mouse models

+49 6221 42-3575
not provided
Sent email
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Registration

Criteria for participation in the ADDRess project

Requirements for registration

The ADDRess project is a subproject of the cancer predisposition register (CPS-register). Therefore, registration in the CPS-register or in the FA-register is a prerequisite for participation in the ADDRess project. You will find all the necessary documents on the CPS-register page or on the FA-register page.

In particular, patients with the following CPS or DNA repair defects should be recorded:

People with even more rare DNA repair defects can also be included.

On our syndrome overview page for physicians you will find a questionnaire that will help you to substantiate your suspicion of one of these cancer predisposition syndromes, if a definite diagnosis is not yet available. If you, your child or your patient has been diagnosed with a certain tumor, our CPS-Navigator can help you to narrow down the cancer predisposition syndromes associated with this tumor.

Children, adolescents and adults can participate in the ADDRess project. In the following you will find further information and all necessary documents for registration.

Registration by the treating physician

How to proceed

  • 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 doctor providing the information.

  • Please fill out the delivery form (german language).

  • Then send us the biospecimen with the delivery form to the postal address given in the figure below. The Information in the figure below are provided in german language.

  • Please repeat the blood collection and shipment as described in the figure.

Letters of information and consent as well as the delivery form for biospecimen can be found in the download area at the bottom of this page.

Registration in the ADDRess project by self-registration

How to registrate yourself or your child in the ADDRess project:

  • 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 ADDRess project 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.

  • We will send you the necessary material for the blood collection and cheek swab. Please have a doctor take blood samples and send the blood together with the delivery form for biospecimen and a version of the completed and signed consent form to the following address:

    Hannover Medical School
    Department for Paediatric Haematology and Oncology, OE 6780
    KPS-Register
    Carl-Neuberg-Straße 1
    D-30625 Hannover, Germany

  • The blood sample should normally be taken once a year. Please contact us to obtain the appropriate material.

Blood collection and delivery

We collect blood, bone marrow, skin and tumor samples as well as cheek mucosa swabs from patients with DNA repair defects. The samples are either sent to the CPS Registry Centre or directly to one of the subprojects. You will find an overview in the following figure.
For children, the quantities may be less than the amounts indicated.

We will be pleased to send you PAXgene® tubes for the samples. Simply contact us!

KPS-Register
Department for Paediatric Haematology and Oncology
Hannover Medical School
Carl-Neuberg-Str. 1
D-30625 Hannover, Germany
+49 511 532-9408 oder -6738
+49 511 532-161026
PAO.LFS-CPS@mh-hannover.de

Download material

In this section of our website you will find all the necessary documents to participate in the ADDRess project. Please note that different versions of the information and consent forms must be used for registration by the treating physician and for self-registration. If you have any questions regarding registration, please contact our documentation and laboratory team Beatrice Hoffmann, Birte Sänger or Christina Reimer directly.

Registration by the treating physician

Description of the ADDRess project (german language)
We recommend that the project be reviewed by your local ethics committee.

Please always send blood together with the delivery form. You will find the address at the top of this page and on the delivery form.

Registration by self-registration

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

Please always send blood together with the delivery form. You will find the address at the top of this page and on the delivery form.

Contact persons

If you have any questions about the execution or shipment, please do not hesitate to contact us. You can contact us by telephone best in the morning.
We are gladly there for you!

Beatrice Hoffmann

Documentalist

+49 511 532-9408
+49 511 532-161026
PAO.LFS-CPS@mh-hannover.de
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Christina Reimer

Biologic Technical Assistant

+49 511 532-7803
+49 511 532-161026
PAO.LFS-CPS@mh-hannover.de
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Birte Sänger

Documentalist

+49 511 532-9408
+49 511 532-161026
PAO.LFS-CPS@mh-hannover.de
More