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Forms and guides

Forms and guides

Downloads: forms and guides

Download RD-Connect documents, forms, templates, guides and policies.

Patient registries

Registry & Biobank Finder - user guide for registry and biobank managers

Gainotti S. et al.: The RD-Connect Registry & Biobank Finder: a tool for sharing aggregated data and metadata among rare disease researchers. 2018, Eur J Hum Genet.

Biobanks

Registry & Biobank Finder - user guide for registry and biobank managers

Sample Catalogue - user guide for biobank managers

Sample Catalogue - browsing sample data (slides from the webinar for biobank managers)

Sample Catalogue - uploading sample data (slides from the webinar for biobank managers)

Sample Catalogue - template for sample upload

Genome-Phenome Analysis Platform

Adherence Agreement RD-Connect GPAP

Code of Conduct RD-Connect GPAP (Note that this is the RD-Connect GPAP Code of Conduct and is not related to BBMRI-ERIC)

Data submission guide

PhenoTips guide

Guidelines to Submit Solved Cases

Guidelines to Update Solved Cases

Guidelines for Search Across all Tool

Guidelines for Cohort Tool

Guidelines for Macthmaker Exchange (MME)

Guidelines for using IGV Browser

Ethical, Legal and Social Issues

International Charter of principles for sharing bio-specimens and data

Template for Materials / Data Transfer Agreement (MTA/DTA)

Guidelines for Informed Consent

Generic consent form

Publication Policy for users

Guides to making Videos

RD-Connect guide to making videos - filming people

RD-Connect guide to making videos - video tutorials

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