2004-07-15
MACRO used to collect German HIV Registry data
27 member centres of the competence network HIV/AIDS (HIVNET) funded by the German Ministry of Education and Research are now using MACRO, InferMed’s electronic data collection system, to collect data into its national HIV registry. The participating HIVNET centres will collect data locally and this registry data will be used to build up a profile of the national HIV/AIDS patient cohort.
KKS Cologne, one of the six German Clinical Study Coordination Centres in Germany using MACRO, is hosting and managing the MACRO system for HIVNET. Acting as the Application Service Provider to the HIVNET, KKS Cologne will provide all systems, applications, helpdesk, training and support, taking on the responsibility for registry administration and allowing the HIVNET to focus on building up its knowledge of the patient population.
Also important in this process has been the development of a national data security model by the HIVNET. This model was adopted nationally on May 17th 2004 and ensures data collection follows security procedures that are accepted across all regions.
With the establishment of the HIVNET data collection infrastructure and the training of the centres to use MACRO having been completed, the important process of building a significant and extremely useful national registry can begin. Speaking of the use of MACRO in such a process Mark Snell, InferMed’s Marketing Manager, said, “We are pleased to see MACRO being used for such an important project. The compilation of such registry data across Germany will promote further understanding of the effect the HIV virus is having on the patient population and using electronic data collection will enhance the speed and efficiency with which this information is gathered.”
About the HIVNET
The HIV and AIDS Network is a national research system that brings together major study groups in Germany. These groups deal both with clinical care and clinically oriented basic research into HIV infection and AIDS to improve quality of life and life expectancy of HIV-infected patients.
HIV treatment is undergoing rapid development and is being driven by pharmaceutical innovations. German HIV specialists taking care of 40,000 patients in approximately 40 specialised centres for HIV therapy have regional procedures for accepting and modifying these innovations in regional systems, but it is more difficult to coordinate research activities at the national level. These groups, with their local communication structure, interdisciplinary cooperation and well-organised access to large number of patients from academic centres and primary care settings, do already form isolated networks. Their linkage with groups specialised in immunological, virological, pharmacological and genetic research through the HIVNET is of utmost importance.
About KKS Cologne
The Coordinating Centre for Clinical Trials Cologne is an institution of the Medical Faculty of the University of Cologne and has the task of efficiently supporting all processes involved in clinical trials and improving the scientific quality of multi-centre clinical trials and registers. This is done by ensuring professional conduct in innovative and competitive clinical trials, following international guidelines and offering training in all scientific and organisational aspects of trials.
