EUROPLAN - European Project for Rare Diseases National Plans Development

Events

Presentations

II INTERNATIONAL SUMMER SCHOOL, Rare diseases and orphan drug registries
15-19 September 2014 - Rome

Epidemiological study design, data sources, variables - Yullka Kodra (September 15)

Registry types, Aims, Building a registry, Management, Sustainability - Lawrence Korngut (September 15)

2° International Summer School - Domenica Taruscio (September 15)

Omics and links with biobanks and registries - Mattia Calissano (September 16)

New paradigm for a clinicaltaxonomyappliedto Rare Diseases - Paul Landais, Rémy Choquet (September 16)

How to code RD with international terminologies - Ana Rath (September 16)

EPIRARE Common Data Elements - Luciano Vittozzi (September 16)

The need for data sharing in rare diseases research - Sabina Gainotti (September 17)

The Italian National Registry for Rare Diseases - Yllka Kodra (September 17)

Epidemiologic analyses, confounders, sample stratification - Michele Santoro (September 17)

MTA P3G - template

Patient unique identifier - Manuel Posada (September 18)

Quality assurance - Manuel Posada (September 18)

Spanish Rare Diseases Registries Research Network - SpainRDR - Manuel Posada (September 18)

Reporting and dissemination - Elena Bravo (September 19)

Why it is important for you - Paola De Castro (September 19)

The Application of the Human Phenotype Ontology - Melissa Haendel (September 19)