Studies & list of variables
Studies & BeoNet register
Up-to-date and, above all, practical data on the outpatient care of patients with lung diseases is essential to ensure adequate medical care that is a) geared to the needs of those affected and b) takes economic aspects into account. To this end, the BeoNet register links the electronically available, patient-centered information from the primary and secondary healthcare sectors and supplements it with additional information from specific questionnaires.
Two examples of this are the study on COPD and end-stage lung disease (ELD), which is being carried out as part of the development of the BeoNet registry:
Although patients with end-stage lung disease (ELD) are one of the most care-intensive patient groups in Germany, there are major evidence gaps with regard to patient-related treatment outcomes and the classification of economic impact.
For the management and multidisciplinary patient care of ELDs after transplantation, those affected are dependent on the support of stakeholders in the primary healthcare sector. To determine the resource use, cost intensity and effectiveness of treatment options for ELD, data from the electronic patient record, clinical outpatient clinics and patient quality of life surveys are combined. Quality adjusted life years (QALY) and the cost-benefit ratio are documented and analyzed.
The aim is to describe the individual, health, professional and systemic-economic effects of lung transplants.
The study is listed in the German Register of Clinical Studies under the number DRKS00005821. A positive ethics vote is available: No. 1457-2012.
Chronic obstructive pulmonary disease (COPD) is one of the most common widespread diseases and is now the fourth most common cause of death. The disease is associated with a restriction of breathing and has a progressive nature. Nevertheless, the current data on healthcare provision for patients with COPD is unsatisfactory. More detailed, practical and well-founded information on care-specific (and economic) aspects is needed. This will make it possible to document and analyze the development and success of systemic and preventive measures over a longer period of time.
Further information on the study can be found in the German Register of Clinical Studies under the number DRKS00005784. A positive ethics vote is available: No. 1480-2012.
Variable list
Nowadays, the attending physician usually documents his activities, findings and therapies etc. in electronic form. Although the practice information systems used for this are practice-specific (and therefore often different), what these systems have in common is that they have been using the so-called BDT interface (treatment data carrier interface) since 1994. This enables the system-independent export of treatment data to files. A description and categorization of the BDT data can be found here.
The complete list of variables can be found here.