We’ve defined a clear path to drugs and interventions for the unmet medical conditions of people with Down syndrome (DS).

LuMind IDSC contributes to research projects and initiatives that target five strategic research categories that cover the life span of people with DS.

Prevent Alzheimer's

Prevent
Alzheimer’s
Disease

Sleep Apnea

Sleep Apnea

Improve Cognition and Independence Infographic

Independence

Gene Therapy Infographic

Gene Therapy

Access to Treatments Infographic

Access to
Treatments

Preventing Alzheimer’s Disease
  • LuMind IDSC intends to delay Alzheimer’s Disease in those with Down syndrome by 20 years or more or prevent it altogether.  We developed DS-CTN, a clinical trial network, to conduct clinical trials, lead discussions with Pharma to support trials, and fund LIFE-DSR, a critical natural history study of aging with DS and Alzheimer’s, and the development of adaptive assessment scales to account for the variation in symptoms.

 

Sleep Apnea
  • Sleep apnea disproportionately affects the Down syndrome population and we are interested in providing families with better treatment and diagnostic options. Our research was historically focused on better understanding sleep architecture and how it relates to cognitive development in children. Now we are increasingly supporting novel, innovative treatment approaches and exploring how we might develop improved ways of screening for and diagnosing sleep apnea.

 

Independence
  • Independence is affected by cognition, speech, sleep, behavior. Decision making, memory, attention, and problem-solving are different domains of cognition critical for successfully engaging in activities independently in school, at home and work. LuMind IDSC supports clinical trials for cognition and new interventions for sleep apnea that affects 60 – 80% children and adults with DS, we also support or have supported research on the validation of specific cognitive targets and the development of gene therapies, the unique sleep patterns, and techniques to improve sleep among those with Down syndrome. We are very interested in finding treatments for other issues related to speech, behavior, hearing loss, and regression.

 

Gene Therapy
  • Gene therapy is an exciting avenue for possible treatment and may help reduce the impact of the third copy of chromosome 21 in people with Down syndrome. Funding and following research in understanding the role of specific genes for disease in Down syndrome is an important goal to LuMind IDSC. Also, we support efforts and translational research that aims to make this approach safe and effective in the Down syndrome population. Gene therapy research may pave the way for new and innovative treatments.

 

Access to Treatments
  • Our focus is to accelerate research and clinical trials, improve medical care, and support reimbursement. We launched the DS-CTN Clinical Trials Network (DS-CTN) with 11 Down syndrome specialized sites to support the more rapid conduct of clinical trials in children and adults. To provide access to relevant medical information, we collaborate with Massachusetts General Hospital for a novel virtual clinic called DSC2U that provides caregivers anywhere access to best-in-class medical information through an online questionnaire that generates a report for personal use and another one to share with their primary care provider.

Research Spotlights

Preventing Alzheimer’s
Landmark clinical trial
of a therapeutic agent
for adults with DS
AC Immune/UCSD
DS Clinical Trials Network
Blazing a trail to
conduct large, multi-site
trials for Down syndrome
Visit DS-CTN.org
LIFE-DSR: Longitudinal Investigation
A natural history study
to understand progression
of aging and AD in DS
Learn More
Accumulation of Misfolded Tau
Cerveau Technologies
partners to add imaging
sub-study to LIFE-DSR
Read Press Release
Developing gene therapies
Attempt to silence some
extra genes on chromosome
21 through gene therapy
UConn Health
Advance understanding
Stem cell research using
skin cells of individuals
with and without DS
MIT - Picower Institute
Research and Medical Care FB Group
For caregivers to stay
up-to-date on DS research
and medical care advances
Join Today
Improving cognition
Learning Through Objects
in Infants and Toddlers
Observational study
Vanderbilt University