RD-Connect Project
About the Project
RD-Connect Project 2012-2018
Work developed
Periodic activity reports
Committees, Panels and Partners
Committees and Panels
Partners
Core Implementation Group
Funding and collaborations
General Information
Introduction to rare diseases
Importance of Data
A bottleneck of data
Omics data
Connecting Data
Data linkage
FAIRification of rare disease registries
Linked data and ontology task force
Ontologies in rare disease registries
Ethics and legal in research
Ethical, Legal and Social Issues (ELSI)
Sharing of biosamples and data
Standards for informed consent
Patients and families
For Patients and Families
Patient engagement
Resources
Genome-Phenome Analysis Platform (GPAP)
What is GPAP?
How to submit data to RD-Connect GPAP
FAQs: GPAP
Registry and Biobank Finder
Finder for Registries
Finder for biobanks
Importance of Phenotypic data
Registry common data elements
Biobank assessment process
Sample Catalogue
What is the Sample Catalogue?
Biosamples Data and the EuroBiobank
FAQ: Sample Catalogue
Bioinformatic tools
Documentation
Forms and user guides
Newsletters 2012 – 2018
Presentations and flyers
Videos
Privacy policy 2012 – 2018
Contact
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