III INTERNATIONAL EPIRARE WORKSHOP - Rare disease and orphan drug registries - Abstract submission

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 [web address], by August 31, 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 September 20, 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.

Question Title

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

Question Title

* 2. Author, co-authors, and affiliations in their original language:
(e.g. Rossi M. (1), Bianchi A. (1),
1) Istituto Superiore di Sanità, Roma, Italy)

Question Title

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

Question Title

* 4. Please select your abstract topic:

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.

Question Title

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

Question Title

* 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

Question Title

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

Question Title

* 2. Author, co-authors, and affiliations in their original language:(e.g. Rossi M. (1), Bianchi A. (1), 1) Istituto Superiore di Sanità, Roma, Italy)

Question Title

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

Question Title

* 4. Please select your abstract topic:

Question Title

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

Question Title

* 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

* 2. Author, co-authors, and affiliations in their original language:
(e.g. Rossi M. (1), Bianchi A. (1),
1) Istituto Superiore di Sanità, Roma, Italy)