Collaborate with us
This collection of data is intended to inform and advance research and understanding in AS whilst allowing for an environment of collaboration. Sharing data helps to ease the data entry burden on caregivers and save time and money for those designing new projects
Linkage with other datasets to alleviate caregiver burden and allows for rich, complete data.
Unique Identifiers allow researchers to share data specific to a study participant without exposing personally identifiable information and match participants across labs and research data repositories. Linkage for identifiable data is also possible with consent from participants.
If you have a project where you intend to collect data on Angelman syndrome we encourage you to talk with us about what is collected and how we may be able to save time by populating a base dataset, or if you already have a dataset we would love to talk with you about collaboration to achieve the best possible outcomes for individuals with Angelman syndrome.