Research takes place on Saturday June 25 starting at 8:00am
*It's open to all forms of Down syndrome.*
*All research is optional and free of charge.*
Once you have registered for the conference and have checked the box that indicates you are interested in participating in research, you will receive an email from IMDSA two weeks prior to the 2017 Research and Retreat Weekend. This email is used to determine when your family will arrive at the conference, which research in which you want to participate, the form of Down syndrome your child has, as well as their age and gender. Once that information is received, another email will be send to you by the Wednesday evening prior to the event with your research schedule for Saturday and any necessary documents or information needed for the research.
Dr. Colleen Jackson-Cook ~
Virginia Commonwealth University
Will be collecting blood and skin samples. Skin samples are done by using a toothbrush to rub the inside of the check. (Both are optional.)
Children with Down syndrome and mosaicism will be asked to provide blood samples and buccal samples. The parents of the child will also be asked to provide blood samples. These specimens will be used to answer questions about the causes of health problems associated with mDs and to develop improved means for diagnosis.
*Please note* Must have a confirmed diagnosis of mDs or Ds to participate.
Dr. Ruth Brown ~
Virginia Commonwealth University
Survey base questionnaire
Little is known about depression and anxiety in individuals with Down syndrome, and even less in individuals with mosaic Down syndrome. Research examining risk factors associated with depression and anxiety in this population is needed to develop better prevention and treatment programs. The proposed study will examine self-report and parent/caregiver-reports of depression, anxiety, peer bullying, and coping strategies. Ages 10 & up.
Keith Smith ~
Linda Crnic Institute for Down Syndrome Research
Will be collecting blood, urine and skin samples. Skin samples are done by using a toothbrush to rub the top of tongue. (All are optional.)
goal of this project is to increase the speed at which research on Down
syndrome and associated co-morbidities can be done and minimize the
burden on patients by allowing them to sign tiered consent that will
allow researchers to use their biological samples for different research
projects in the future. Interested researchers will access the samples
by applying to a review board consisting of staff from the Linda Crnic
Institute, the Sie Center for Down Syndrome, and experts on research
ethics and experts on Down syndrome.
Deborah Fidler ~
Colorado State University
research team is interested in the thinking skills that facilitate
goal-directed behavior, often referred to as “executive functions”. We
are particularly interested in understanding how executive functions
develop before the age of 8 years in individuals with mosaicism, or T21.
Findings from our research will help our team develop more targeted
educational planning approaches for individuals with mosaicism. During
each visit with our research team, your child will engage in a set of
play-based activities that last for 30-60 minutes, depending on child