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III INTERNATIONAL EPIRARE WORKSHOP - Rare disease and orphan drug registries

Istituto Superiore di Sanità, Rome (Italy), November 24-25, 2014

Patient registries are key tools in rare disease research and are now the subject of unprecedented popularity in translational research and of extensive policy actions.

This workshop intends to increase the visibility of RD patient registries and databases within and beyond the scientific community and to promote the debate and the interaction among the many stakeholders of patient registration activities.

The Workshop is open to researchers, clinicians, patients’ and parents’ associations, policy makers and enterprises.

The workshop will consist of invited presentations as well as open oral and poster sessions based on a call for abstracts and selection by the International Scientific Committee.

Abstracts are welcome on any subject and experience useful to inform and support the debate regarding the main aims of the workshop.

It is expected that special interest will be dedicated to:

• the contribution of registration activities to recent advancements in the natural history, epidemiology and pathogenesis of rare diseases as well as patient care and quality of life;
• practical and innovative applications of registries, such as recruitment of patients in clinical trials, social and health service planning, patients’ support networks and integration with other initiatives, such as biobanks and databases for genomic and phenomic analysis;
• lessons learned in the management of RD registries, e.g. regarding financial sustainability, quality assurance, ethical issues and patients’ confidence, data protection, ownership and accessibility, as well as patients’ contribution, involvement and advocacy initiatives;
• the impact of e-health initiatives, new communication technologies and social networks.

Important dates

Deadline for abstract submission: October 12, 2014. No abstracts will be accepted after this date.

Deadline for registration: October 15, 2014. Due to organizational constraints and limited available places, registration after this date cannot not be guaranteed. Registration is carried out by filling the on-line form which can be found at this link

Notification of abstract acceptance: October 27, 2014.

Specific information

Final Programme: The Final Program of the Workshop will include oral presentations of selected abstracts.

Fees: Registration is free of charge.

Abstract submission process

1. Authors should submit their abstract (more than one abstracts can be submitted) in English filling the on-line abstract submission form, which can be found at this link , by October 12, 2014.
2. Abstracts should only be submitted on line as indicated above.
3. The International Scientific Committee will select submitted abstracts for oral and poster presentations. If the abstract is selected for oral or poster presentation at the Workshop, the corresponding author must participate in the Workshop.
4. Notification of acceptance will be sent to corresponding authors by e-mail by October 27, 2014.

Guidelines for abstracts
• Abstracts should be based on activities carried out within or with the support of rare disease or orphan drug registries.
• All abstracts should be submitted and presented in English.
• Abstracts should contain no more than 400 words, excluding the title, full name and surname of authors, with their affiliation, and references, which should not exceed the number of 3.
• Tables, charts and figures should not be included in the abstracts.

Please check periodically on the CNMR website any updates on the Workshop.
For additional information, clarifications, or questions, please contact the Workshop secretariat at


Published 20-09-2014 in News , last update 24-11-2014


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