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15.5 million euros for model healthcare research registers

150 register experts discussed quality criteria and future challenges at the Register Days 2019 conference in Berlin

7 May 2019. On 6 and 7 May 2019, around 150 experts for medical registers gathered in Berlin, Germany’s capital, for Register Days 2019, an event dedicated to this specialist topic. They exchanged insights regarding quality criteria and future challenges associated with patient-centric registers. “The mark of an excellent register is a large volume of quality-assured data records for a clearly defined question,” explained Sebastian C. Semler, Executive Director of TMF (Technologies, Methods and Infrastructure for Networked Medical Research). Register Days 2019 was organised by TMF in cooperation with the German Network for Health Services Research (DNVF).

Model patient registers: gaining insights, avoiding errors

   
During the event, the six successful finalists for the Model Registers programme were presented. They will receive 13 million euros of funding over the next five years from the German Federal Ministry of Education and Research (BMBF). A further 2.5 million euros will be provided for project work by the finalists themselves and from third parties. The funded projects are a fever-app register; HerediCaRe; ParaReg; a register for recurrent stone formation in the upper urinary tract; a register for living donors; and the TOFU register for non-infectious uveitis. The winners were chosen from 16 other competing entries. Patient registers are especially suited to analysis of healthcare activities and to identify processes or procedures that could be improved. They show the impact of diverse treatments and care options on disease progression and quality of life. Moreover, they can deliver insights into the quality of treatment in various healthcare facilities and fields.

Harnessing the power of digital technology


The prospective, longitudinal register for recurring stone formation in the upper urinary tract highlights the potential offered by integrating registers with data from frontline healthcare. This model register project, led by Professor Martin Schönthaler, makes use of data captured within the scope of the Medical Informatics Initiative from hospital information systems at participating institutions. this data is combined with data collected via a patient app. The attending experts agreed that the combination of register data with healthcare data will, in future, enable the Medical Informatics Initiative to have a substantial influence on the register landscape.

Evolving from data collection to an interactive tool

   
   
Patient involvement is becoming an increasingly important issue for registers, as demonstrated by the fever-app project, headed up by Dr Ekkehart Jenetzky, Mainz University Medical Center. This app is intended to provide guidance to parents, GPs and hospitals with regard to managing fevers, and to develop quality standards for treatment. It makes use of a variety of data, including information entered by patients’ parents, and the ultimate goal is an interactive, app-based register. By increasing the element of patient interaction it will be possible to raise public awareness of the significance of registers.

Increasing public awareness of registers


Professor Edmund Neugebauer from DNVF urged the register community to improve communications with their stakeholders. “Registers are systematic collections of data that make a valuable contribution to research and healthcare. There needs to be greater communication about the data and their value in order to strengthen the register community,” stated Neugebauer. “Moreover, we need to highlight the contribution registers make to the digital transformation of healthcare through their quality-assured long-term progression data,” added Sebastian Semler from TMF.

 

Event slides

Contact:

Wiebke Lesch, Stefan Rabe,

Technologies, Methods and Infrastructure for Networked Medical Research (TMF)

Tel.: +49 (0)30 22 00 24 723, mobile: +49 (0)173 6141663, email: presse@tmf-ev.de

www.tmf-ev.de


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