Registry Data Collection and Retention

The rate of enrolment into REGISTRY over the past year has increased by one third, with a total of 4,282 participants registered on the web portal. As the REGISTRY cohort continues to expand, study sites are encouraged to balance their efforts between recruitment and retention to ensure that the collection of high-quality data is sustained at its current volume.The contribution of sites and participants involved in REGISTRY continues to be remarkable, and provides EHDN with a robust clinical and biological repository that will serve to expedite our understanding of this disease. We would like to take this opportunity to encourage EHDN members to apply for access to the REGISTRY database for research proposals. Please visit http://www.euro-hd.net/html/projects/proposals forfurther information.