Supporting and Advancing Research

LADDER

Linking Angelman and Dup15q Data for Expanded Research (LADDER), is a strategic collaboration between the Angelman Syndrome Foundation and the Dup15q Alliance. Both organizations have made significant investments in the search for therapeutics and treatment. 

See a press release for more information.

What is LADDER?

LADDER is a database that brings together information about Angelman and Dup15q syndromes, collected from sources all over the world including:

How does LADDER Advance Research

Before LADDER, information about an individual with AS from research studies, doctor visits and registries was stored in disparate systems. There was no connection or way to link a research participant to their information from a clinic visit.  

Gathering the information in one place and connecting it, creates a higher level of understanding of AS which increases the potential for future discoveries that will lead to clinical trials and treatments. In addition, we will better understand how development, behavior and clinical needs change over time.

The data in LADDER can be accessed by:

  • Physicians who treat Angelman syndrome
  • Researchers who are working to find treatments and a cure
  • Pharmaceutical partners who are working on drug development projects

Research Projects

The following research was conducted with information obtained through LADDER.

Developmental Skills of Individuals with AS
Anjali Sadhwani, PhD, Boston Children’s Hospital

How you can help

Visit the LADDER website and enroll!

During enrollment, you will be asked questions about your individual. If he/she has participated in a research study or visited an ASF Clinic, some information could already be in LADDER. During enrollment you will consent to linking the information together. 

Plus, completing enrollment in LADDER, will reduce the number of times you will need to fill out the same information  when participating in collaborating research studies or visiting an ASF Clinic.

Enrollment consists of completing 3 steps: 

  1. A consent form to participate in LADDER.
  2. A clinical needs questionnaire that gives background information about your family such as age, gender, and genotype.
  3. A consent to have information received from AS Clinics you may have gone to or from research studies you may have participated in.

On average, enrollment takes 20 minutes.

Additional Information

After reviewing this information, if you still have questions, contact the LADDER team at ladder@rti.org or call 1-888-454-2588.