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.
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.
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.