Case Studies
Overview
The first clinical patient registry we developed has been online since 2002 and is now used in more than ten countries. From the very beginning, we focused on online technologies which build a bridge between decentralized data collection and a centralized database. Other patient registries were developed in the years that followed. The features and underlying technologies have been developed and updated on a continuous basis.
Multinational Mastocytosis Registry
The most recent project – an internationally oriented mastocytosis registry – has been in live operation since 2012. The registry was initiated by the European Competence Network on Mastocytosis (ECNM) and developed in close cooperation with Professors Peter Valent and Wolfgang Sperr from the Medical University of Vienna.
The ECNM registry provides support with the clinical management and long-term documentation of diagnostic and treatment data of patients with mastocytosis. The web-based software provides an easy-to-use interface and guarantees maximum security standards.
Further links:
Austrian Myeloma Registry
The Austrian Myeloma Registry was initiated as a national registry in 2007 by a working group consisting of Professor Heinz Ludwig, Professor Johannes Drach and Dr. Wolfgang Willenbacher and rolled out across Austria at the beginning of 2008. Dr. Willenbacher has been the registry coordinator since this time.
The Austrian Society for Hematology and Oncology (OeGHO) has taken over patronage of this registry. The pharmaceutical company Janssen is the main sponsor. Furthermore, the project is supported by the Austrian Federal Ministry for Transport, Innovation and Technology (BMVIT), the Austrian Federal Ministry of Economy, Family and Youth (BMWFJ) and the federal provinces of Tyrol and Salzburg as part of COMET – Competence Centers for Excellent Technologies.
In the course of the first five years, the basic system has been gradually expanded and it now has a comprehensive pharmacovigilance reporting tool, an extended export module and a tool to create patient groups with flexible inclusion and exclusion criteria.
Further links:
Austrian CML Registry
The Austrian CML Registry was initiated as a national registry in 2006 by a working group consisting of Professor Günther Gastl, Professor Domenik Wolf and the Central European Leukemia Study Group (CELSG) and rolled out across Austria at the beginning of 2007. Dr. Stefan Schmidt has been the registry coordinator since this time.
The Austrian Society for Hematology and Oncology (OeGHO) has taken over patronage of this registry. The pharmaceutical company Novartis is the main sponsor. Furthermore, the project is supported by the Austrian Federal Ministry for Transport, Innovation and Technology (BMVIT), the Austrian Federal Ministry of Economy, Family and Youth (BMWFJ) and the federal provinces of Tyrol and Salzburg as part of COMET – Competence Centers for Excellent Technologies.
In the course of the first six years, the basic system has been gradually expanded and now has a follow-up timeline that is based on the international CML guidelines, an extended export module, a tool to create patient groups with flexible inclusion and exclusion criteria and an online charting module with which graphs about responses, progression, side effects and survival can be generated in real time. Furthermore, dynamic progress curves have been implemented for a number of the central clinical parameters.
Further links:
Multinational Thromboreductin Registry
The Thromboreductin Registry is first online registry developed by us. It was initiated by Dr. Rudolf Widmann, CEO of AOP Orphan, in 2001 and has been live since 2002. The registry now operates in more than ten countries. Several hundred centers have documented data from several thousand patients during this time.
AOP Orphan is an Austrian company specializing in rare diseases (also known as orphan diseases). The team researches, produces and sells innovative solutions, concentrating on four treatment areas: hematology and oncology, cardiology and pulmonology, neurology and psychiatry as well as metabolic disorders. With an export ratio of 70%, AOP Orphan is internationally active and one of the leading players in the market.
Further links: