Faces of Angelman Syndrome
The Global Angelman Syndrome Registry was set up in 2016 as a tool to help medical professionals and researchers learn more about individuals with Angelman Syndrome (AS). The Registry has created new opportunities to gain insight and understanding about AS, providing an important tool for both facilitating research and enabling researchers running clinical trials to quickly identify suitable participants for each study.
The Registry is a global initiative that collects data on individuals with AS through a series of online surveys to build the largest and most comprehensive global collection of information on AS to date.
Enrolment in the registry is facilitated through the website https://www.angelmanregistry.info/ with a FAQ about the registry and a link for self-registration. The information on the website functions as a Participant information and Consent Form (PICF). There are also links to the PICF and Protocol on the website that can be downloaded as PDFs and either signed electronically or printed and signed manually.
The registration process involves a parent or caregiver completing an online registry form on the website. Upon completing the form, they receive an email notification to confirm and activate their account. Once their activation link is clicked, they may log in and complete the consent process prior to entering registry data.
The HREC approved this protocol and did not find any issues with the consent process as participation was voluntary and parent/ caregiver driven - information provided could be read at leisure using additional resources. Importantly, it is an opt-in process requiring some effort to register and therefore anyone doing so clearly demonstrates their intent.
It has features of a dynamic consent platform as it enables registrants to go back in and change details and to do further questionnaires.
Contact details:
Angelman Registry
Dr Megan Tones
Registry Curator
curator@angelmanregistry.info
Mater HREC Approval Number: (HREC/13/MHS/76)