RD-Connect
Research Areas
At a Glance
- Status: Active Consortium
- Year Launched: 2013
- Initiating Organization: RD-Connect
- Initiator Type: Third-party organization
- Rare disease
- Disease focus:
Rare Disease - Location: Europe
Abstract
RD-Connect is a unique global infrastructure project that links databases, registries, biobanks, and clinical bioinformatics data used in rare disease research into a central resource for researchers worldwide. In a six-year project funded by the European Union but uniting researchers across the world, it will develop an integrated research platform in which complete clinical profiles are combined with “-omics” data and sample availability for rare disease research, in particular research funded under the International Rare Diseases Research Consortium (IRDiRC).
Mission
RD-Connect’s primary objectives are as follows:
Structure & Governance
RD-Connect is led by coordinator Hanns Lochmüller of Newcastle University.
The project’s Governing Board, consisting of one representative from each partner institution, is responsible for setting annual objectives and policy in accordance with the rules of the EC contract. The Governing Board provides legal and strategic oversight and ratifies any necessary changes to the consortium and workplan.
For operational management, the coordinator is supported by the Executive Management Committee and the coordination team in Newcastle.
Patient Engagement
The Patient Advisory Council (PAC) examines ethical, social, and participatory questions linked to research taking place in the context of RD-Connect, NeurOmics, and EURenOmics. This will ensure that all project activities have a patient-centric approach throughout. EURORDIS coordinates activities in respective projects with the PAC as well as invites its patient representatives to meetings and discussions.
Issues, concerns, or dilemmas brought forth by the PAC are addressed by the Rare Disease Patient and Ethics Council (RD-PEC) as well as all project partners. The PAC is composed of a multidisciplinary group of patients, parents, representatives of patients’ organizations, clinicians, legal academics, sociologists, scientists, and ethicists.
Data Sharing
All data- and material-sharing agreements should be ethically robust and mindful of the responsibilities owed to the donors to make best ethical use of the samples and data consistent with their consent.
The international charter of principles for sharing biospecimens and data provides guidance for effective legally and ethically grounded sharing and can be found on the RD-Connect website.
The charter is inspired by the following principles:
Links/Social Media Feed
|
|
|
|
Homepage |
Points of Contact
RD-Connect Coordination Team
Institute of Genetic Medicine
University of Newcastle upon Tyne
International Centre for Life
Newcastle upon Tyne
NE1 3BZ
United Kingdom
Emma Heslop (Project Manager)
phone: +44 191 241 8621
fax: +44 191 241 8770
email: emma.heslop@ncl.ac.uk
Sponsors & Partners
|
Aix-Marseille University Medical School |
|
Association Francaise contre les Myopathies |
|
Banco Nacional de ADN-University of Salamanca |
|
CARE4RARE |
|
Centro de Investigacion Biomedica En Red de Enfermedades Raras (CIBERER) |
|
Centro Nacional de Analisis Genomico |
|
Centro Nacional de Investigaciones Oncologicas |
|
Charles University |
|
Children’s National Medical Center |
|
Consiglio Nazionale delle Ricerche |
|
EuroBioBank |
|
European Bioinformatics Institute |
|
European HD Network |
|
European Organisation for Rare Diseases |
|
Finovatis |
|
Fondation maladies rares |
|
Fondazione Telethon |
|
Foundation for Research and Technology – Hellas |
|
Genzyme Europe BV |
|
Glaxo SmithKline |
|
Innolyst, Inc. Patient Crossroads |
|
Institut d’Investigacions Biomediques August Pi I Sunyer |
|
Institute of Molecular Genetics and Genetic Engineering University of Belgrade |
|
Instituto de Salud Carlos III |
|
Interactive Biosoftware |
|
Istituto Superiore di Sanita |
|
Karolinska Institutet |
|
Leiden University Medical Center |
|
LYSOGENE |
|
Medical University of Graz |
|
Murdoch University |
|
National Center for Neurlogy & Psychiatry |
|
National Institute of Environmental Health |
|
National Institutes of Health, Office of Rare Diseases Research |
|
NGRL Manchester |
|
Office of Population Health Genomics |
|
Orphan Europe Recordati Group |
|
Orphanet |
|
PhenoTips |
|
Telethon Network of Genetic Biobanks |
|
University Hospital of Ulm |
|
University Medical Center Groningen |
|
University of Aveiro |
|
University of Gottingen |
|
University of Leicester |
|
University of Malta |
|
University of Newcastle upon Tyne |
|
University of Paris Diderot – Paris 7 |
|
University of Patras |
|
University of Washington GeneReviews |
|
University of Zurich |
|
Uppsala University |