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.
Since the recruitment phase has now concluded, patients can no longer participate in the ADDRess project. However, we are of course still happy to answer any questions you may have about the project.
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 was a consortium aimed at developing a translational research approach involving patient representatives, physicians from various specialties, and scientists. The goal was 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 was a prerequisite for participation in the ADDRess project. In particular, patients with the following KPS or DNA repair defects were 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 were also included in the ADDRess project.
Biomaterial
As part of ADDRess, we initially collected two oral swabs and 7.5 ml of both EDTA and heparin blood from participants. We kindly asked treating physicians 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 was required, with exceptions for heparin blood if necessary.
We also emphasized the importance of examining tumor material. If a malignant solid tumor was detected in patients with KPS, surgical removal was often necessary during the course of treatment. Submitting a tissue sample from these tumors was beneficial, as it aided research into tumor development to improve cancer therapies.
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.
Coordination of the consortium
Coordination of the consortiumCoordination 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."
Psychosocial care for people with DADDR and their families
Psychosocial care for people with DADDR and their familiesPsychosocial care for people with DADDR and their families
„We want to advance psychosocial support in an evidence-based manner."
PD Dr. med. Laura HinzeProfiling 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 strategiesProfiling 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 SchlemmerImproving 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 agentsImproving 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. Felicitas TholInvestigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndrome
Investigation of clonal hematopoiesis, a preleukemic condition in patients with Li-Fraumeni syndromeInvestigation 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 PfisterAnalysis of mutation and methylation profiles in DADDR-related cancer
Analysis of mutation and methylation profiles in DADDR-related cancerAnalysis 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, PHDIdentification 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 activationIdentification 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 MildeMolecular validation of novel drug treatments for LFS tumors
Molecular validation of novel drug treatments for LFS tumorsMolecular 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."
Coordination of the consortium
Coordination of the consortiumCoordination 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."Psychosocial care for people with DADDR and their families
Psychosocial care for people with DADDR and their familiesPsychosocial care for people with DADDR and their families
„We want to advance psychosocial support in an evidence-based manner."- 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 strategiesProfiling 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 agentsImproving 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. 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 syndromeInvestigation 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 cancerAnalysis 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 activationIdentification 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 tumorsMolecular 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."
Coordination of the consortium
Coordination of the consortiumCoordination 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."Psychosocial care for people with DADDR and their families
Psychosocial care for people with DADDR and their familiesPsychosocial care for people with DADDR and their families
„We want to advance psychosocial support in an evidence-based manner."- 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 strategiesProfiling 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 agentsImproving 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. 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 syndromeInvestigation 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 cancerAnalysis 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 activationIdentification 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 tumorsMolecular 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."
