Dup15q Alliance Research

As part of our mission, Dup15q Alliance seeks to unite families, researchers, and professionals; and promote research, awareness, and empower individuals with dup15q syndrome by advancing breakthrough research and life-changing therapeutic treatments. Dup15q Alliance formally endorses and funds research and collaborates with researchers interested in research on chromosome 15q duplications by disseminating research information and promoting opportunities for Dup15q Alliance families to participate in research studies and clinical trial opportunities.

How Families Can Get Involved

Research is our best hope for advancing breakthrough research and life-changing therapeutic treatments for dup15q syndrome and other related rare diseases. Research is not just the responsibility of scientists and doctors. We must leverage the resources we do have, which include our strong patient community

Families can participate in research in several ways, including:

  1.  Sharing their child’s medical information in the LADDER Database so researchers can understand how dup15q affects individuals, how it develops over time, the effectiveness of treatment options, and to give insight into designing clinical trials to test new therapeutics that could potentially change the lives of those impacted. (this information is de-identified data, meaning it cannot be traced back to you or your family)
  2.  Volunteering for clinical studies or trials to help doctors understand how treatments affect patients.
  3.  Participate in research opportunities, many are short surveys utilizing your expertise as a parent.

Sign up for our NEW Research and Clinical Trial Text Alerts! You can unsubscribe from text alerts at any time.
Use this link below or Text “Alerts” to (847) 744-8904 to sign up!

The Science and Research Committee is proud to offer a “Science and Research Help Ticket.”
Do you have questions about science and research into Dup15q Syndrome? Dup15q is a complex disorder with many exciting advances taking place in science and research. Whether you’re a seasoned caregiver or newly diagnosed, it can be difficult to navigate what’s taking place in research. Please feel free to utilize this resource to answer any questions you may have. You can fill out the Research Help Ticket here: Science/Research Help Ticket