Not interested in sharing your child’s data? We understand.

Individuals with dup15q medical data is the best chance of finding new and improved therapeutics for dup15q syndrome and we want to protect that. We share de-identified information (which means it cannot be traced back to you or your family).

The de-identified data in LADDER can be accessed by:

• Physicians who treat dup15q syndrome
• Researchers who are working to find treatments and a cure
• Pharmaceutical partners who are working on drug development projects

How is your information protected

It is never possible to guarantee that a system is completely secure, but we have many strong tools in place to protect your information.

• We will keep all the information about you and your family on a private network that has high security; only members of the research team can see it. Family members’ names and contact information are never sold to anyone, and never given to anyone outside of the research team.
• LADDER will share de-identified information (which means it cannot be traced back to you or your family) with other researchers whose research studies have been reviewed and approved by an appointed data access committee. This committee is made up of individuals representing any group that contributes data. Current members include individuals from: the Angelman Syndrome Foundation, the Dup-15q Alliance, the Angelman Natural History Study, and the Angelman Global Registry, as well as parent representatives from both the Angelman and Dup15q communities. This allows LADDER to help support research all over the world. We will not share anything that could connect the de-identified information to you or your family.

*You do not have to answer every question in the survey. For most questions, you may choose not to enter an answer and can move to the next question by simply clicking on the NEXT button. A few questions are required for you to answer (e.g., date of birth). The information from these questions will be used to link your information and route you to the appropriate questions for your family in the enrollment survey.

For more information on LADDER visit: LADDER Learning Network

Questions? Email  15qnetworkcoordinator@dup15q.org