How is your information protected and shared?

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.