Linking Angelman and Dup15q Data for Expanded Research (LADDER) is a database platform that links data on individuals with Angelman or Dup15q syndrome collected from multiple sources, such as research studies, registries, caregiver reports, and clinic visits. By linking these sources of information, LADDER can expand research and accelerate the development of interventions and treatments for individuals with Angelman or Dup15q and their families. The database is sponsored by the Angelman Syndrome Foundation and the Dup15q Alliance to provide a source of extensive data for individuals with these conditions.
LADDER aims to:
- Provide new information to researchers, clinicians, and families about the characteristics and clinical needs of individuals living with Angelman or dup15q syndrome.
- Help further our understanding of potential links between types of genetic mutation and symptom severity.
- Expand our understanding of the experiences of individuals with Angelman or dup15q and their families across the lifespan by collecting information at different times as they age.
- Facilitate the development and testing of new therapeutics.
Parents or caregivers must first enroll in LADDER to provide consent to link various data sources (ei: research studies, registries, caregiver reports, clinic visits) on an individual with AS or dup15q syndrome. We use global unique identifiers (GUIDs), along with a matching algorithm to match datasets with enrolled participants. Once linked, all identifiers are removed from the complete LADDER dataset for data curating and sharing, so only de-identified information will be shared. RTI maintains the linkage database on a secure network.
Why participate in LADDER?
- Linking datasets allows approved researchers to have access to more comprehensive and in depth datasets through a single database. This may also help prevent families from possibly having to repeat efforts in submitting the same information multiple times.
- This allows us to collect information at different times as your child ages, so that we can expand our understanding of Angelman and dup15q syndrome across the lifespan.
- Since Angelman and dup15q syndrome both affect the same region of chromosome 15 and have many similar characteristics/symptoms, advancing the understanding of one disorder can oftentimes lead to better understanding of the other.
Click here to register and enroll with LADDER.
Click here for more information on LADDER.
If you are a researcher and would like more information on how to request access to data in LADDER, please click here.
For step by step guidance on how to register and enroll in LADDER, click here.