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 information from the real experts, the parents, and caregivers, on the patient experience and quality of life. This can also include symptoms, test results, physical signs, imaging, patient age, genetics, as well as on any other factors relevant to the disease and its development.
This data can be examined:
- to find differences and similarities within our dup15q community based on specific factors.
- to identify current care and medications that are working for specific groups of individuals and uncover others that are not effective in individuals with dup15q.
- to identify ways medical care can be improved in order to educate family physicians and specialists.
- to identify how development, behavior, and clinical needs change as individuals with dup15q age.
- to design clinical trials well suited to the entire dup15q population.
- to uncover research or medical care needs that may have gone unnoticed.
Information obtained from the LADDER Database can also play an important role at every stage of drug development, from drug discovery to the design of clinical studies.
The data in LADDER can be accessed by:
Individuals’ data in LADDER database will be de-identified (meaning there is no way to trace to the data to a specific individual or family) before any access is granted
- Physicians who treat dup15q syndrome
- Researchers who are working to find treatments and a cure
- Pharmaceutical partners who are working on drug development projects
These parties must fill out a request for information that is reviewed and approved by the LADDER Data Access Committee.