LADDER Database Stats

November 12, 2022

LADDER Saturday Stats from the LADDER Database

Today’s Saturday Stat: Nearly 45% of dup15q participants in LADDER are between 5-14 years.

We know there are over 500 individuals with dup15q over the age of 18 registered with the Dup15q Alliance. Let’s get enrolled in LADDER! You can help expand research and accelerate the development of interventions and treatments for individuals with dup15q syndrome and their families.

If you are the parent or caregiver of an individual with dup15q syndrome, you can enroll in LADDER by visiting laddertotreatment.org.

LADDER shares de-identified information (which means it cannot be traced back to you or your family) from the LADDER database with approved researchers. When research projects using LADDER data result in publications, we share summaries of the research that are written for families to understand. Ladder: Family-friendly Reports (laddertotreatment.org)

 

How Does LADDER Advance Research?

Before LADDER, information about an individual with dup15q 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 dup15q 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 LADDER Database will collect info