LADDER was developed by the ASF and Dup15q Alliance, in partnership with RTI International, in response to a critical need for a centralized database to collect and manage information provided by parents, caregivers, clinicians and researchers about the natural history and clinical needs of patients with Angelman or Dup15q.
LADDER provides a mechanism to combine data from caregiver surveys, the 15q Clinics Network, the Angelman Syndrome Natural History Study, ASF and Dup15q Alliance registries, as well as other AS or Dup15q targeted research studies. It also will work in harmony with the Global Angelman Syndrome Registry to streamline efforts and maximize the potential of the information for moving treatment development forward. While LADDER works closely with these data collection sources, it does not replace them. Rather, individuals or families who enroll their loved ones with Angelman or Dup15q in LADDER, can be assured that the information they provide to any of these sources, will be used in combination to promote improved quality of life for individuals living with these conditions.
LADDER has the following aims:
- Provide new information to researchers, clinicians, and families about the characteristics and clinical needs of individuals living with Angelman Syndrome (AS) or Dup15q syndrome (Dup15q).
- Help further our understanding of potential links between types of genetic mutation and symptom severity.
- Expand our understanding of the experiences of individuals with AS or Dup15q and their families across the lifespan by collecting information at different time points as they age.
- Facilitate the development and testing of new therapeutics.
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 which professionals at your clinic can access. The forms will ask about the individual's experience with AS/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 AS or Dup15q has participated to share the information you provided to them with LADDER.
- We will link the information you have entered LADDER to the information 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 family-friendly reports about their study results on our website when their research is complete.
- We may contact you to let you know about research opportunities, surveys, or to provide information about AS/Dup15q events, news, etc.
*You do not have to answer every question in the survey. For most of the questions, you may choose not to enter an answer and can move to the next question by simply clicking on the NEXT button. There are a few questions that 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.