Research Opportunities

 As expressed by a researcher at DSACO’s recent collaborative Down Syndrome Research Symposium, “We are experiencing a renaissance when it comes to the multitude of researchers focusing on the Down syndrome population.” In order for many researchers to gain data, however, they must rely on information from individuals with Down syndrome and their families.

Below is a list of opportunities, both web-based and in-person, to help you explore options and possibilities for engagement.

 

 


DOWN SYNDROME REGISTRY

  • DS-Connect®:  The Down Syndrome Registry- A registry for people with Down syndrome                                        DS®-Connect:  The Down Syndrome Registry is a voluntary, confidential, online survey that collects basic health information about people with Down syndrome.  Click Here to Learn More

ONLINE SURVEYS

  • “Family Factors and Quality of Life in Children and Adolescents with Down Syndrome”-Dr. Van Riper, University of North Carolina at Chapel Hill 
    • The purpose of this study is to learn about how parents view family functioning and quality of life with Down syndrome.  Survey Details Here
  • “Occupational Therapy Oral Health Survey”-Dr. Tona, University of Buffalo
    • The purpose of this study is to provide insight into specific needs of individuals with developmental disabilities, the barriers they face in obtaining oral healthcare, and solutions they have found to improve their oral health.  Survey Details Here
  • “Parent View of Down Syndrome Care”-Dr. Santoro, Nationwide Children’s Hospital
    • The purpose of this survey is to ask how about your experience at the time of diagnosis of Down syndrome, experiences with genetics and your views of the Nationwide Children’s Hospital Down syndrome clinic. Complete Survey Here

 

IN-PERSON STUDIES

  • “Aging and Down Syndrome Research Study”- Dr. Head, University of Kentucky                           
    • The purpose of this study is to seek understanding of how aging in Down syndrome may lead to Alzheimer’s disease and affect a person’s memory and thinking as they get older.  Research Details Here
  • “Down Syndrome Research Study”-Dr. Head, University of Kentucky                                                   
    • The purpose of this study is to understand how the brain works in Down syndrome over time. Research Details Here
  • “The Human Trisome Project”-Linda Crnic Institute for Down Syndrome Research, Denver, CO 
    • The purpose of this project will help us understand why individuals with Down syndrome (trisomy 21) are protected from some medical conditions, such as cancer, while highly predisposed to others, such as Alzheimer’s disease. Research Details Here
  • “Neurodegeneration in Aging Down Syndrome”-Dr. Handen, Pittsburgh, PA 
    • The purpose of this study is to identify potential AD-related biomarkers in a group of 180 adults with Down syndrome. Research Details Here
  • “Neuroimaging, Amyloid and Cognitive Function in Down Syndrome”-Dr. Koenig (koenigk@ccf.org), Cleveland, OH 
    • The purpose of this study is to examine how different biomarkers may relate to each other, and to determine which biomarkers may be the most effective at predicting the risk of developing Alzheimer’s disease in people with Down syndrome. Research Details Here
  • “Phase II, Multicenter, Sixteen-Week, Randomized, Double Blind, Placebo-Controlled Evaluation Of the Efficacy, Tolerability and Safety of Memantine Hydrochloride on Enhancing the Cognitive Abilities of Adolescents and Young Adults with Down Syndrome”-Dr. Costa, Cleveland, OH 
    • The purpose of this research study is to learn if the drug Memantine Hydrochloride can help improve memory and learning abilities in adolescents and young adults with Down syndrome.  Research Details Here
  • “Spoken Language Development in Down Syndrome”-Intellectual Disabilities communication Lab, University of Illinois at Urbana-Champaign 
    • The purpose of this study is to find our more about how language skills develop in children between the ages of 6 and 11 who have Down syndrome.  Research Details Here