AG Registries

Brief description

As a result of the increased requirements of health services research, clinical registries with very different methods and objectives are increasingly being initiated and operated alongside the epidemiological registries that have been established for decades. With the Working Group on Registries, a structure has been created to strengthen the work of existing registries and the establishment of new registries through recommendations and quality requirements. Related objectives include the drafting of a consensus definition of the concept of registries, a list of relevant quality aspects and the development of recommendations for the creation of registries.
The working group, which is composed of representatives of the companies/members of the DNVF, held its first constituent working group meeting in February 2009. At this meeting a concrete allocation of tasks was made with the formation of small groups on various partial aspects. After intensive work the "Memorandum Registries for Health Services Research" was published in the journal Das Gesundheitswesen in 2010.On the one hand, the results of the working group are targeted to experts and institutions involved in the design and operation of registries. On the other hand, it is also intended to address scientists who plan to use registry data and want to make a qualitative assessment for this purpose.

In 2014, preliminary work on a register of registries and cohorts, known as the registry portal, was completed and published in the December issue of the journal Das Gesundheitswesen. The results include on the one hand a recommendation on the characteristics used to describe registers and cohorts in the registry portal - the metadata. On the other hand, a first list of procedural rules for the operation of the register portal is proposed. The aim in setting up the registry portal is to create transparency about existing resources and projects, to promote cooperation and to improve the quality of registries.

Within the framework of the Technology and Methods Platform for Networked Medical Research e.V. (TMF) 2014, the preparatory work for the registry portal was presented. A report on this event is available with the presentation documents at http://www.tmf-ev.de/News/articleType/ArticleView/articleId/1551.aspx.

Current information

In order to communicate the memorandum "Registries for Health Services Research", regular seminars of the DNVF are organised by members of the AG. Furthermore, the working group participates in the DNVF-Spring-School with modules on registries. An update to the memorandum "Registers for Health Service

Material

In the accompanying project to the BMBF funding measure "Establishment of model registers in health care research", templates for the research protocol of a register ("register protocol") and for the catalogue of characteristics of a register were developed. The development was funded by the Federal Ministry of Education and Research under the codes 01GY1720A and 01GY1720B. The templates were coordinated with 16 projects that were funded by the BMBF in the concept development phase under the funding measure. The templates are available in German and English.
>>Templates for the research protocol and for the feature catalogue of a register

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