The ADDRess Research Consortium

The ADDRess Research Consortium was established to enhance our understanding of Disorders with Abnormal DNA Damage Response (DADDR) and to improve care for patients with these conditions.

Ten working groups have collaborated to enhance medical and psychosocial support, early cancer detection, diagnostics, and therapy for individuals with impaired DNA repair. The ADDRess research project is built upon the Cancer Predisposition Syndrome (KPS) Registry and is funded by the Federal Ministry of Education and Research.

Details on participation in the project are provided later on this page. For any inquiries, feel free to contact us using the following details:

Quicklinks to the ADDRess Research Consortium

Background of the ADDRess Project: Understanding Disorders with Abnormal DNA Damage Response

Understanding Disorders with Abnormal DNA Damage Response (DADDR) involves rare genetic diseases characterized by impaired DNA repair, leading to a significantly elevated risk of cancer among those affected. Treatment is often challenging due to underlying genetic defects, resulting in increased side effects, intolerances, secondary tumors, and reduced treatment efficacy when compared to patients without DNA repair defects. Optimizing treatment strategies is therefore crucial.

ADDRess is a consortium aimed at developing a translational research approach involving patient representatives, physicians from various specialties, and scientists. The goal is to enhance medical and psychosocial care, cancer monitoring, diagnosis, and therapy for individuals with DNA repair disorders.

Inclusion Criteria

The ADDRess project is based on the Cancer Predisposition Syndrome Registry. Therefore, registration in the KPS registry or the Fanconi anemia registry is a prerequisite for participation in the ADDRess project. In particular, patients with the following KPS or DNA repair defects should be recorded:

  • Ataxia-Teleangiectasia
  • Bloom Syndrome
  • DNA Ligase IV Deficiency
  • Dyskeratosis Congenita
  • Fanconi Anemia
  • Constitutional Mismatch Repair Deficiency
  • Li-Fraumeni Syndrome
  • Nijmegen Breakage Syndrome
  • Rothmund-Thomson Syndrome
  • Werner Syndrome
  • Xeroderma Pigmentosum

People with even rarer DNA repair defects can also be included.

Biomaterial

As part of ADDRess, we initially collect two oral swabs and 7.5 ml of both EDTA and heparin blood from participants. It’s advisable to collect these samples during scheduled blood draws for early cancer detection, minimizing additional venipunctures wherever possible. For annual follow-ups, only 7.5 ml of EDTA blood is required, with exceptions for heparin blood if necessary.

We also emphasize the importance of examining tumor material. If a malignant solid tumor is detected in patients with KPS, surgical removal is often necessary during the course of treatment. Submitting a tissue sample from these tumors is beneficial, as it aids research into tumor development and improves cancer therapies. If surgery is planned, please contact the KPS registry team to organize and coordinate the shipment of tissue material.

All necessary documents for sending biomaterials can be found in the download area of our website by using the search options “Information on Blood and Tissue Samples” and “ADDRess”.

Patient Registration in the ADDRess Research Consortium

We are delighted when individuals living with CPS decide to participate in ADDRess. There are two ways to do this:

As the attending physician, you register your patients with ADDRess.

As the attending physician, you register your patients with ADDRess.

Typically, the attending physician handles the registration with ADDRess. We provide detailed instructions on this process on the “Patient Registration” page. Clicking on this info box will take you directly there.

As a patient, you register with ADDRess yourself.

As a patient, you register with ADDRess yourself.

If the treating doctor cannot register with ADDRess, we also offer CPS patients the option of self-registration. You can find all further information on this on the page “CPS Research – How You Can Participate”. Clicking on this info box will take you there directly.

Sub-Projects within the ADDRess Research Consortium

If you have any questions about a specific sub-project, feel free to contact us. For more information on the project managers, simply click on their names.

  • Prof. Dr. med. Christian Kratz
    Coordination of the consortium
    Coordination of the consortium
    Coordination of the consortium
    „We want to create or expand an infrastructure that facilitates the exchange of information, the coordination of consultations and the entry of medical data for both - patients and medical professionals."
  • Prof. Dr. med. Imad Maatouk
    Psychosocial care for people with DADDR and their families
    Psychosocial care for people with DADDR and their families
    Psychosocial care for people with DADDR and their families
    „We want to advance psychosocial support in an evidence-based manner."
  • Dr. Reinhard Kalb
    Gene identification and functional analyses
    Gene identification and functional analyses
    Gene identification and functional analyses
    „We want to advance genetic research related to these cancer predisposition syndromes"
  • PD Dr. med. Laura Hinze
    Profiling of metabolic changes in Li-Fraumeni syndrome as a basis for new therapeutic strategies
    Profiling of metabolic changes in Li-Fraumeni syndrome as a basis for new therapeutic strategies
    Profiling of metabolic changes in Li-Fraumeni syndrome as a basis for new therapeutic strategies
    „We aim to develop new therapeutic strategies for cancer using metabolic profiles of CPS patients."
  • Prof. Dr. med. Dipl.-Phys. Heinz-Peter Schlemmer
    Improving early cancer detection through innovative imaging techniques and reducing the need for contrast agents
    Improving early cancer detection through innovative imaging techniques and reducing the need for contrast agents
    Improving early cancer detection through innovative imaging techniques and reducing the need for contrast agents
    „We want to improve early cancer detection through innovative imaging techniques and reduce the need for contrast agents."
  • Prof. Dr. med. Kristian Pajtler
    Liquid biopsies for the early detection of DADDR
    Liquid biopsies for the early detection of DADDR
    Liquid biopsies for the early detection of DADDR
    „We aim to establish liquid biopsy as a tool for cancer detection and monitoring in DADDR patients."
  • Prof. Dr. med. Felicitas Thol
    Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
    Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
    Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
    „We aim to investigate clonal hematopoiesis, a preleukemic state, in patients with Li-Fraumeni syndrome."
  • Prof. Dr. med. Stefan Pfister
    Analysis of mutation and methylation profiles in DADDR-related cancer
    Analysis of mutation and methylation profiles in DADDR-related cancer
    Analysis of mutation and methylation profiles in DADDR-related cancer
    „We aim to analyze mutation and methylation profiles in DADDR-related cancer."
  • David T.W. Jones, PHD
    Identification of therapeutic vulnerabilities arising from the interplay of constitutional TP53 loss and abnormal MYCN activation
    Identification of therapeutic vulnerabilities arising from the interplay of constitutional TP53 loss and abnormal MYCN activation
    Identification of therapeutic vulnerabilities arising from the interplay of constitutional TP53 loss and abnormal MYCN activation
    „We aim to analyze mutation and methylation profiles in DADDR-related cancer."
  • Prof. Dr. med. Till Milde
    Molecular validation of novel drug treatments for LFS tumors
    Molecular validation of novel drug treatments for LFS tumors
    Molecular validation of novel drug treatments for LFS tumors
    „We aim to identify therapeutic vulnerabilities for cancers with DADDRs and develop xenograft mouse models to search for effective therapies that can be tested in early clinical trials."
  • Prof. Dr. med. Christian Kratz
    Coordination of the consortium
    Coordination of the consortium
    Coordination of the consortium
    „We want to create or expand an infrastructure that facilitates the exchange of information, the coordination of consultations and the entry of medical data for both - patients and medical professionals."
  • Prof. Dr. med. Imad Maatouk
    Psychosocial care for people with DADDR and their families
    Psychosocial care for people with DADDR and their families
    Psychosocial care for people with DADDR and their families
    „We want to advance psychosocial support in an evidence-based manner."
  • Dr. Reinhard Kalb
    Gene identification and functional analyses
    Gene identification and functional analyses
    Gene identification and functional analyses
    „We want to advance genetic research related to these cancer predisposition syndromes"
  • PD Dr. med. Laura Hinze
    Profiling of metabolic changes in Li-Fraumeni syndrome as a basis for new therapeutic strategies
    Profiling of metabolic changes in Li-Fraumeni syndrome as a basis for new therapeutic strategies
    Profiling of metabolic changes in Li-Fraumeni syndrome as a basis for new therapeutic strategies
    „We aim to develop new therapeutic strategies for cancer using metabolic profiles of CPS patients."
  • Prof. Dr. med. Dipl.-Phys. Heinz-Peter Schlemmer
    Improving early cancer detection through innovative imaging techniques and reducing the need for contrast agents
    Improving early cancer detection through innovative imaging techniques and reducing the need for contrast agents
    Improving early cancer detection through innovative imaging techniques and reducing the need for contrast agents
    „We want to improve early cancer detection through innovative imaging techniques and reduce the need for contrast agents."
  • Prof. Dr. med. Kristian Pajtler
    Liquid biopsies for the early detection of DADDR
    Liquid biopsies for the early detection of DADDR
    Liquid biopsies for the early detection of DADDR
    „We aim to establish liquid biopsy as a tool for cancer detection and monitoring in DADDR patients."
  • Prof. Dr. med. Felicitas Thol
    Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
    Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
    Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
    „We aim to investigate clonal hematopoiesis, a preleukemic state, in patients with Li-Fraumeni syndrome."
  • Prof. Dr. med. Stefan Pfister
    Analysis of mutation and methylation profiles in DADDR-related cancer
    Analysis of mutation and methylation profiles in DADDR-related cancer
    Analysis of mutation and methylation profiles in DADDR-related cancer
    „We aim to analyze mutation and methylation profiles in DADDR-related cancer."
  • David T.W. Jones, PHD
    Identification of therapeutic vulnerabilities arising from the interplay of constitutional TP53 loss and abnormal MYCN activation
    Identification of therapeutic vulnerabilities arising from the interplay of constitutional TP53 loss and abnormal MYCN activation
    Identification of therapeutic vulnerabilities arising from the interplay of constitutional TP53 loss and abnormal MYCN activation
    „We aim to analyze mutation and methylation profiles in DADDR-related cancer."
  • Prof. Dr. med. Till Milde
    Molecular validation of novel drug treatments for LFS tumors
    Molecular validation of novel drug treatments for LFS tumors
    Molecular validation of novel drug treatments for LFS tumors
    „We aim to identify therapeutic vulnerabilities for cancers with DADDRs and develop xenograft mouse models to search for effective therapies that can be tested in early clinical trials."
  • Prof. Dr. med. Christian Kratz
    Coordination of the consortium
    Coordination of the consortium
    Coordination of the consortium
    „We want to create or expand an infrastructure that facilitates the exchange of information, the coordination of consultations and the entry of medical data for both - patients and medical professionals."
  • Prof. Dr. med. Imad Maatouk
    Psychosocial care for people with DADDR and their families
    Psychosocial care for people with DADDR and their families
    Psychosocial care for people with DADDR and their families
    „We want to advance psychosocial support in an evidence-based manner."
  • Dr. Reinhard Kalb
    Gene identification and functional analyses
    Gene identification and functional analyses
    Gene identification and functional analyses
    „We want to advance genetic research related to these cancer predisposition syndromes"
  • PD Dr. med. Laura Hinze
    Profiling of metabolic changes in Li-Fraumeni syndrome as a basis for new therapeutic strategies
    Profiling of metabolic changes in Li-Fraumeni syndrome as a basis for new therapeutic strategies
    Profiling of metabolic changes in Li-Fraumeni syndrome as a basis for new therapeutic strategies
    „We aim to develop new therapeutic strategies for cancer using metabolic profiles of CPS patients."
  • Prof. Dr. med. Dipl.-Phys. Heinz-Peter Schlemmer
    Improving early cancer detection through innovative imaging techniques and reducing the need for contrast agents
    Improving early cancer detection through innovative imaging techniques and reducing the need for contrast agents
    Improving early cancer detection through innovative imaging techniques and reducing the need for contrast agents
    „We want to improve early cancer detection through innovative imaging techniques and reduce the need for contrast agents."
  • Prof. Dr. med. Kristian Pajtler
    Liquid biopsies for the early detection of DADDR
    Liquid biopsies for the early detection of DADDR
    Liquid biopsies for the early detection of DADDR
    „We aim to establish liquid biopsy as a tool for cancer detection and monitoring in DADDR patients."
  • Prof. Dr. med. Felicitas Thol
    Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
    Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
    Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
    „We aim to investigate clonal hematopoiesis, a preleukemic state, in patients with Li-Fraumeni syndrome."
  • Prof. Dr. med. Stefan Pfister
    Analysis of mutation and methylation profiles in DADDR-related cancer
    Analysis of mutation and methylation profiles in DADDR-related cancer
    Analysis of mutation and methylation profiles in DADDR-related cancer
    „We aim to analyze mutation and methylation profiles in DADDR-related cancer."
  • David T.W. Jones, PHD
    Identification of therapeutic vulnerabilities arising from the interplay of constitutional TP53 loss and abnormal MYCN activation
    Identification of therapeutic vulnerabilities arising from the interplay of constitutional TP53 loss and abnormal MYCN activation
    Identification of therapeutic vulnerabilities arising from the interplay of constitutional TP53 loss and abnormal MYCN activation
    „We aim to analyze mutation and methylation profiles in DADDR-related cancer."
  • Prof. Dr. med. Till Milde
    Molecular validation of novel drug treatments for LFS tumors
    Molecular validation of novel drug treatments for LFS tumors
    Molecular validation of novel drug treatments for LFS tumors
    „We aim to identify therapeutic vulnerabilities for cancers with DADDRs and develop xenograft mouse models to search for effective therapies that can be tested in early clinical trials."