Consortium partners

Vaartkom 17, 3000 Leuven, Belgium
Website: https://als.eu/

EupALS is a European association taking the interests of European Amyotrophic Lateral Sclerosis patients (pals) to heart. EupALS unites 28 national ALS associations from 22 European countries to cooperate better. It is determined on creating equal rights for all European pals and to provide better access to research and information about it. Participation in Real4Reg ensures that patients are actively involved in the consortium, with a special focus on communication and dissemination of the project activities in an accessible way.

Participants:
Evy Reviers – Chairwoman
Dirk De Valck – Scientist/Administration

Axel Heides Gade 1. 2300 Copenhagen S, Denmark
Website: https://laegemiddelstyrelsen.dk/en

DKMA is an agency under the Danish Ministry of the Interior and Health of Denmark. The purpose of DKMA is to ensure that medicinal products used in Denmark are of satisfactory quality, safe to use and that they have the desired effect. It supervises companies manufacturing and distributing medicinal products. DAC is the Data Analytics Centre of the DKMA and works to transform information and data on medicine and medicine devices into knowledge that can benefit citizens. In Real4Reg, DAC obtained protocol-based access to data from the Danish Data Health Authority and led Work Package 1 (January 1, 2023 to August 31, 2024), where it was responsible for the coordination and management of use cases 1 and 2. In the period September 1, 2024 to December 31, 2026 DAC will continue supporting Real4Reg in close collaboration with the new Work Package 1 leaders at Aarhus University.

Participants:
Elvira Vaclavik Bräuner – DAC/ Specialist consultant, Epidemiologist
Monika Korcinska Handest – DAC/ Researcher
Niels Henrik Meedom – DAC/ Project leader in DAC

Olof Palmes Allé 43-45, DK-8200 Aarhus N Denmark
Website: https://kea.au.dk/

Aarhus University (AU) is a leading public research university located in Aarhus, Denmark. It offers a wide range of academic programs and is renowned for its research in areas such as climate, health, and technology. Department of Clinical Epidemiology (DCE)is a large academic department offering research, teaching and supervision. The department is affiliated both with the Aarhus University and Aarhus University Hospital.  In Real4Reg, the DCE AU contributes its expertise in the analysis of data from Danish population registries, and with clinical epidemiology expertise in the successful execution of the use cases of the project. Since September 1, 2024 DCE AU is leading the Work Package 1.

Participants:
Vera Ehrenstein – Professor/ Scientist
Erzsébet Horváth-Puhó – Associate Professor/ Scientist
István Bakos – Biostatistician

CSC – IT Center for Science Ltd. P.O. Box 405. FI-02101 Espoo, Finland
Website: https://www.csc.fi/en/home

CSC is a Finnish centre of expertise in information technology owned by the Finnish state and higher education institutions. It provides internationally high-quality ICT expert services for higher education institutions, research institutes, culture, public administration, and enterprises. In Real4Reg, CSC contributes to data science, machine learning, and artificial intelligence in the consortium.

Participants:
Billy Braithwaite – Data analytics and AI
Aurélie Vancrayenest – Data analytics and AI
Jesse Harrison – Data analytics and AI

Kuopio Campus. Yliopistonranta 1, FI-70210 Kuopio, Finland
Website: https://www.uef.fi/en

The University of Eastern Finland is the most multidisciplinary university in Finland. It has a high standard of interdisciplinary research and education to respond to global challenges and build a sustainable future. UEF leads the preparation of good practice examples for safety and effectiveness analyses of RWD for the post-authorisation stage and the improvement of methods for risk estimation in observational data. UEF also brings data from the Finnish health system to the project.

Participants:
Anna-Maija Tolppanen – Faculty of Health Sciences, School of Pharmacy Professor/scientist (epidemiologist)
Sirpa Hartikainen – Faculty of Health Sciences, School of Pharmacy Professor/scientist, clinical advisor
Anne Paakinaho – Faculty of Health Sciences, School of Pharmacy/scientist Pharmacoepidemiologist
Liisa Pylkkanen – Faculty of Health Sciences, School of Pharmacy, Oncologist, clinical advisor
Blair Rajamaki – Faculty of Health Sciences, School of Pharmacy/scientist
Thuan Vo – Faculty of Health Sciences, School of Pharmacy/project researcher

Kurt-Georg-Kiesinger Allee 3, 53175 Bonn, Germany
Website: https://www.bfarm.de/EN

BfArM is an independent federal higher authority within the portfolio of the Federal Ministry of Health being responsible for the authorization, monitoring, and testing of pharmaceuticals and medical devices in Germany. BfArM is responsible for the coordination and project management of Real4Reg, and also for contextualisation and implementation of the results obtained, through the advisory board and expert work meetings. BfArm also provides data from the German health system to the project.

Participants:
Britta Hänisch – Head of Division Research
Cornelia Becker – Division Research/ Scientist
Christoph Röthlein – Division Research/ Scientist
Julia Wicherski – Division Research/ Scientist
Martin Russek – Division Research/ Scientist
Kerstin Pfeifer – Division Research/ Coordination
Steffen Heß – Head of Health Data Lab (HDL)
Peter Thul – Health Data Lab (HDL)/ Scientist

Schloss Birlinghoven 1. 53757 Sankt Augustin, Germany
Website: https://www.scai.fraunhofer.de/en.html

Fraunhofer SCAI develops innovative methods in Computational Science and actively supports their take-up in industrial practice. The institute combines mathematical and computational knowledge with a focus on algorithms – bringing benefits to customers and partners. Fraunhofer leads the establishment of appropriate methodology and tools in Real4Reg, by developing and implementing data science (in particular Artificial Intelligence and Machine Learning) algorithms for the entire project.

Participants:
Holger Fröhlich – Head of AI & Data Science Group, Deputy Head of Department of Bioinformatics
Mohamed Aborageh – AI & Data Science Group / Scientist
Manuel Lentzen – AI & Data Science Group / Scientist
Jiajun Qiu – AI & Data Science Group / Scientist

Venusberg-Campus 1, Gebäude 99, 53127 Bonn, Germany
Website: https://www.dzne.de/en/

DZNE is an interdisciplinary research institution that investigates neurodegenerative disease in all its facets. It is one of six “centres for health research” founded by the German Ministry of Education and Research to combat the most important and widespread diseases. DZNE provides its extensive expertise in pharmacoepidemiology analysis to Real4Reg use cases, both in pre-authorisation & evaluation and in post-authorisation.

Participants:
Jonas Peltner – Scientist
Lucas Depner – Scientist

33,Pearse Street,Dublin Ireland DO2RR25
Website: https://eurohealth.ie/

EIWH is a non-governmental organisation that promotes gender equity in public health, research, and social policies across Europe. Over the years, it has worked closely with the European Commission, Member States, and the World Health Organisation to place gender main streaming on the health and research agenda. EIWH enriches the Real4Reg project with the patients’ perspectives, with an important role in the design of effective and accessible communication of the project.

Participants:
Rebecca Moore – Scientist
Vanessa Moore – Scientist
Maeve Cusack – Scientist
Hilary McNamara – Scientist

Parque de Saúde de Lisboa – Avenida do Brasil, 53. 1749-004 Lisboa – Portugal
Website: https://www.infarmed.pt/web/infarmed-en/

Infarmed is a Government agency accountable to the Portuguese Health Ministry that evaluates, authorises, regulates, and controls human medicines as well as health products, namely, medical devices and cosmetics for the protection of Public Health. In Real4Reg, INFARMED contributes data from the Portuguese health system and coordinates the dissemination, communication, and exploitation of the project, ensuring that the results are outreached by the stakeholders of EU member states.

Participants:
Cláudia Furtado – Head of HTA, Pricing and Reimbursement Division; Head of Information and Strategic Planning Division
Célia Silva – Information and Strategic Planning Division/data analyst
Inês Costa – HTA, Pricing and Reimbursement Division/ HTA assessor
Joana Fernandes – Information and Strategic Planning Division/market analyst
Catarina Venda – Information and Strategic Planning Division/market analyst