Idea and Structure

Research and Health Care for the Benefit of Lymphoma Patients

Aims

Best Treatment and Information

The leading German research groups and health care facilities in the field of malignant lymphomas have joined forces in the Competence Network Malignant Lymphomas. The cooperation aims to improve communication between scientists, health care professionals and patients, and to accelerate the transfer of the latest scientific findings into primary health care, thereby ensuring the best treatment options and information for any lymphoma patient.

Participants

The results of the German lymphoma study groups have led to significant progress in the diagnosis and therapy of malignant lymphomas over the past few decades. Within the network, the study groups are working together with professionals in hemato-oncology, pathology and radiotherapy, and with scientists, statisticians and computer specialists. In order to address patients' questions and to include their needs into the research projects, patients, patients' advocates and self-help groups are also involved in the network.

Communication, Quality Management and New Therapies

Based on the findings of the German lymphoma study groups, the individual projects mainly explore topics which are best addressed in a close interdisciplinary collaboration. These include development and implementation of a computer-based communication infrastructure for lymph node pathology and radiotherapy, analysis of epidemiological and health-economical data, or systematic reviews of medical publications on malignant lymphomas. The network is mainly active in the field of information and communication, quality management and evidence-based medicine, as well as in the evaluation and development of new therapies.

Communication

Central Office & Telematics

The central office coordinates the network activities and is responsible for public relations. It informs hematologists and practicioners as well as patients via brochures, workshops and symposia. The telematics centre of the network provides the IT infrastructure for a rapid and efficient internal and external data transfer. In a close collaboration of the central office and the telematics centre, the networks homepage has been developed. In addition, the lymphoma study groups offer a consultation service for oncologists and patients.

Lymph Node Pathology

In 1996, the six German reference centres for lymph node pathology established a common platform for standardised histo-pathological diagnosis of lymphomas. Since 2001, they use the WHO classification as diagnostic guideline. Within the competence network, the reference centres have established a common shared database and an IT-based communication which is linked to the study secretariats. This new IT platform enables a much more rapid exchange of patients' data and provides the reference pathological diagnosis before initiation of treatment.

Radiotherapy

To assure a high quality of radiotherapy for patients with lymphomas, an integrated computer-based imaging and data transfer platform has been established within the network. Using this facility, radiographs may be exchanged easily and quickly, enabling teleradiological conferences between radiotherapists in the reference centres and clinicians. Thus, important clinical decisions can be made without any delay, especially in more complicated cases.

Tissue Data Base

The knowledge of the prognostic impact of biologic parameters in malignant lymphomas will enable a more individualised therapy which is tailored to the individual risk of every patient. However, little data on biological risk factors is currently available due to the fact that lymph node biopsies are routinely conserved in paraffin which is not appropriate for most molecular methods. To overcome this problem, one project of the network focuses on the infrastructure for the collection of fresh tumour tissue.

Quality Management

Network of Private Practices

Due to recent progress in medicine, lymphoma patients are more frequently treated on an outpatient base. Therefore, private practices have an increasing responsibility to contribute to the further development of therapies. Within the competence network more than 80 private practices for hematology and oncology collaborate in order to establish a quality management programme for outpatients with malignant lymphomas, and to increase the number of private practices which take part in clinical trials.

Epidemiology & Health Economics

Epidemiology and health economics are the subject of several projects: How many people develop malignant lymphomas per year? How and where are the patients treated? Is the actual treatment of lymphoma patients efficient with regard to its benefits and its costs? So far, our knowledge about the health care situation and the prognosis of lymphoma patients who are treated outside clinical trials is extremely limited. To improve this situation, one project compares the outcome of clinical trial participants with that of patients treated outside clinical trials.

Evidence Based Medicine

The "Cochrane Hematological Malignancies Group" has been funded within the network. This group undertakes and maintains a series of systematic reviews of health care interventions in the field of defined hematological malignancies which, given the amount of medical publications, aim to help people to decide between different therapeutical options. In addition to medical specialists, patients may also take part in the reviewing process. From October 2000 to January 2003 the group has published four reviews in the Cochrane Library, further 24 are in preparation.

Quality Assurance

Quality assurance protocols for the optimisation of established treatment options only use drugs which are approved for the respective disease entity. They differ from drug approval trials with regard to their legal and financial conditions. A working group within the competence network develops quality standards which are based on the Declaration of Helsinki and the "Good Clinical Practice"-Guidelines and which take the particular demands of quality assurance protocols into account. In order to ensure high quality standards, IT-based tools are developed to facilitate the design, performance and evaluation of clinical trials.

Development of New Therapies

High-Dose Therapy

In the treatment of malignant lymphomas, the significance of high-dose therapy followed by transplantation of hematopoietic stem cells has increased within the last few years. Today it is an integral part of the treatment regimen of the German lymphoma study groups. The aim of one project in the network is to develop standards for the design, implementation and evaluation of these therapies. Based on these standards, different high-dose therapy protocols will be compared.

Long Term Effects of Radiochemotherapy

High-dose radio-chemotherapy with subsequent autologous peripheral blood stem cell transplantation has been shown to result in a superior progression-free survival in indolent lymphomas. However, the positive effect may be hampered by the cumulative occurrence of late toxicities, especially the increase of secondary malignancies such as myelodysplastic syndromes (MDS) and secondary acute myeloid leukemias (AML). One project focuses on the role of predisposing factors in the pathogenesis of secondary malignancies and on the identification of early stages.

Vaccine Therapy

Immuno- and gene-therapeutic treatments are promising therapeutical options in oncology when they are used in addition to conventional therapies. The aim of one project within the network is to identify tumor antigens that are suitable as targets for a vaccine therapy and to identify those patients who would benefit from such an immunotherapy. In the first phase of this project, the cancer-testis antigen SCP-1 has been found to be a promising candidate for lymphoma vaccine development.

What is the performance of the Network?

• it combines nationwide the German lymphoma study groups, health care groups and professionals in the field of hematology and oncology, radiotherapy, pathology, medical statistics and informatics, university hospitals, non-university hospitals, private outpatient clinics, patients, patients' advocates and self-help groups
• it investigates causes and risk factors for the development of malignant lymphomas
• it evaluates established treatments
• it developes and examines new treatment options
• it compares treatment and outcome of patients in clinical trials and general care
• it generates concepts for the improvement of cost-effectiveness in lymphoma care
• it developes quality management tools for the treatment of lymphoma patients
• it provides valid and understandable information on current and important issues in the field of lymphoma for both clinical physicians and patients