What will happen if you agree to enroll in LADDER?
- You will be asked to complete the enrollment survey. The survey will ask for some basic information about you and your family members, such as age, gender, and household income.*
- If a visit is scheduled with a 15q Network Clinic (previously known as Angelman Syndrome Clinic and Dup15q Syndrome Clinic), you will be asked to complete additional LADDER forms online for your clinic visit. This information will be stored in the database as research data that professionals at your clinic can access. The forms will ask about the individual's experience with Angelman or Dup15q, including questions on topics such as health, sleep, eating, and behaviors.
- We will ask other research studies (such as the Angelman Syndrome Natural History study) and registries in which the individual with Angelman or Dup15q has participated to share the information you provided to them with LADDER.
- We will link the information that you have entered in LADDER to the information that LADDER obtains from the other research studies, registries, and clinics.
- We will share de-identified information (which means it cannot be traced back to you or your family) from the LADDER database with approved researchers. These researchers will post summaries of ongoing research that are written for families to understand on our website when their research is complete. See our family-friendly reports here.
- We may contact you to let you know about research opportunities, surveys, or to provide information about Angelman or Dup15q events, news, etc.
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.