Stichting Duchenne Data Foundation (DDF)

Stitching Duchenne Data Foundation (DDF) is a non-profit patient initiated and managed organization. It is a worldwide collaboration in order to enhance the understanding of the course of Duchenne Muscular Dystrophy (DMD) and Becker Muscular Dystrophy (BMD), the effects of treatments, the needs and preferences of DMD/BMD patients and all other aspects relevant to the lives of DMD/BMD patients. DDF is committed to the realisation of this task by way of the following goals:

  • Collect data from PROs, PROMs, PMR etc. in a data collection hub;
  • Integrate worldwide sources of information for DMD such as databanks, biobanks and registries in one unified environment;
  • Provide solid and safe information to parents, clinicians, regulators and other stakeholders;
  • Promote and support research;
  • Develop tools for better use of existing data.

DDF also runs the Duchenne Academy that trains patients and advocates from all over the world and the CAB (Community Advisory Board) that consult almost all the research and development pipelines in Duchenne. DDF is also collaborating with GO-FAIR (www.go-fair.org), the practical implementation of the European Open Science Cloud (ESOC), for the FAIR treatment of Duchenne Data. DDF has also prior expertise on  statistical modeling, artificial intelligence and machine learning models.

DDF will contribute to Data Integration-related tasks in WP7. Also, DDF -being part of the Dissemination and Exploitation Board- will support UPPMD during dissemination and exploitation activities in WP8.  Further, DDF will provide a secure repository under Data FAIR Principles and GDPR regulations for all the data produced during the project.

UCL

Website

www.duchennedatafoundation.org

Team

George Paliouras

George Paliouras, PhD

Position in Organisation
Chair of DDF

Profile
George Paliouras is Research Director and head of the Intelligent Information Systems division of the Institute of Informatics and Telecommunications at NCSR “Demokritos”, and also acting, on a voluntary basis, as the Chairman of DDF.George Paliouras is involved in many European and national research projects in Artificial Intelligence field. Recently, he is coordinating the H2020 project iASiS on “Integration and analysis of heterogeneous big data for precision medicine”. As a core member of the R&D technology cross-functional team evaluating digital health platforms in the Duchenne Patient Community, ensures quality data-driven recommendations from the patient community are respected in all DMD projects, and that patient-initiated projects enjoy connectivity and interoperability avoiding the silos and promoting scientific knowledge in DMD. George Paliouras will contribute to the relevant software development, data management and FAIR-ification of the data that the project produces. The goal is to set up a safe data environment, where the data is FAIR but also the patient community can make the most out of it.

Paraskevi ‘Elvina’ Sakellariou

Paraskevi ‘Elvina’ Sakellariou PhD

Position in Organisation
Research Coordinator and Project Manager

Paraskevi ‘Elvina’ Sakellariou holds a BSc degree in Cell and Molecular Biology, an MSc in Prenatal Genetics and Fetal Medicine, and a PhD in Medical Genetics. Elvina Sakellariou has an extensive experience on the study of the muscular dystrophy FSHD.  As a post-doc fellow, she was the key researcher for the development of a humanized model for the study of FSHD pathophysiology (Department of Physiology, School of Medicine, University of Maryland, USA). Currently, the animal model is being used by Fulcrum Therapeutics (Cambridge, MA, USA) to test a new therapeutic drug for FSHD. Further, Elvina Sakellariou has been involved in many FP7, Horizon 2020 Marie Skłodowska-Curie Research and Innovation Staff Exchange (RISE) actions, and Horizon 2020 RIA actions as a scientist in charge, leading networking, research, and dissemination activities. Elvina Sakellariou will be primarily involved in project management activities.