LADDER was developed to help maximize the potential of several data collection efforts being conducted in Angelman and Dup15q syndromes. As such we are eager to collaborate with researchers and pharmaceutical companies to advance knowledge of these conditions and promote the development and testing of effective therapeutics.
Parents or caregivers must first enroll in LADDER to provide consent to link various data sources on an individual with AS or Dup15q. We use global unique identifiers (GUIDs), along with a matching algorithm to match extant datasets with enrolled participants. Once linked, all identifiers are removed from the complete LADDER dataset for data curating and sharing. RTI maintains the linkage database on a secure network.
There are two ways researchers can be involved with LADDER: as a consumer of the datasets and/or as a contributor to the data in LADDER.
Accessing LADDER data
Requests for data access will be reviewed initially by LADDER staff for completeness and then shared with the Data Access Committee (DAC), who will determine if the request can be approved. The DAC meets once a month to discuss applications.
There are three levels of data access provided by LADDER:
- Level 1: This is provided for families, clinicians, or researchers to preview LADDER content and data elements through the data dashboard. This level is free and accessible via the LADDER website here. Permission for level 1 access is not required from the DAC. The Level 1 Data Dashboard is currently under construction--come back soon for updates! In the meantime, please contact us at email@example.com or toll free at 1-888-454-2588 for questions about the datasets.
- Level 2: This level provides de-identified datasets for researchers to use in statistical analysis for pre-clinical explorations, publications, presentations, or grant preparations. Professionals, researchers or students can apply for level 2 access via the application form here.
All Level 2 applications will be reviewed by the Data Access Committee. IRB/ethical board approval and/or a signed data use agreement will be required prior to release of any data.
If you are interested in applying for Level 2 access, please complete this form and a member of the team will follow up with additional information.
- Level 3: This level is designed to support recruitment efforts for clinical trials or other research studies. Researchers interested in using LADDER as a mechanism for recruitment or for survey development or distribution should complete the level 3 application here.
All level 3 applications will be reviewed by the Data Access Committee. Evidence of IRB approval will be required prior to the distribution of recruitment material. Once approved, the LADDER staff will disseminate recruitment materials to eligible participants.
If you are interested in applying for Level 3 access, please complete this form and a member of the team will follow up with additional information.
Becoming a contributor
Contributing data to LADDER helps build the database to include more participants as well as unique variables, which combined with other data sources, can amplify and add to existing knowledge of these rare conditions. Advantages to researchers to including their data in LADDER include:
- A secure, HIPPA compliant location for long-term storage of data
- A unique log-in to the LADDER portal for on-demand access to their data
- Potential to add historical variables from other data sources to enhance the ability to answer targeted research questions
- A seat on the LADDER Data Access Committee to determine if and when aggregated data will be provided to outside researchers
- Access to RTI support services, including survey development, survey programming, statistical support, publication preparation support (additional costs apply)
If you are interested in becoming a contributor to the LADDER database, please complete this form and a member of the team will follow up with additional information.