International workshop: Abstract

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* 1. Poster or Abstract title (100 characters):

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* 2. Author, co-authors (name, Surname, title), and affiliations (Name of the Institution, Country)

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* 3. Corresponding author (Name, Surname, Telephone and email)

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* 4. Please select your abstract topic:

contribution of registries to the advancement of the knowledge about the natural history, epidemiology and pathogenesis of rare diseases, and of patient care and quality of life

practical applications of registries (patients’ support networks, recruitment of patients in clinical trials, social and health service planning, integration with biobanks and neonatal screening);

Registries management, strategies for financial sustainability, quality assurance, compliance with ethical and legal requirements, ownership and accessibility of data, patients’ participation;

impact of e-health initiatives, new communication technologies and social networks.

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* 5. Please, insert your abstract here (max 400 words)

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* 6. References (max 3) according to the Uniform Requirements for Manuscripts Submitted to Biomedical Journalsor Vancouver Style: http://www.nlm.nih.gov/bsd/uniform_requirements.html