Thank you for expressing interest in participating in research at the 2017 IMDSA Research and Retreat Conference at the Great Wolf Lodge in Colorado Springs, CO!
We are excited to have many of our returning researchers as well as some new researchers join us this year. Described below is each researcher’s project. You will need to sign up for appointments ahead of time using SignUpGenious.com (information below). All research is optional and at no cost to you. When you meet with each researcher, the researcher will further explain the research as well as review an Informed Consent Form with you. In order to participate, you must sign the consent form. However, even if you sign the consent form, you can always choose not to participate further. Some researchers will be collecting blood and buccal (inside of mouth) samples; these are optional to you however should you choose to participate, you must have the consent form signed and present this to the lab technician in order to have samples taken.
On Friday, the researchers will be available in the Northwest Territories room after the presentations (~4:35 – 5:30 PM) to review the research and the Informed Consent form with you and answer any questions ahead of the Saturday appointments. This is a good time to meet with them to address any of your questions. If you cannot make this time, the researchers will review the consent and any questions during your appointment on Saturday.
Please do not hesitate to contact IMDSA should you have any questions or concerns; we look forward to seeing you soon!
*Please note*
This registration form will be shared with the researchers!
Once this form has been filled out, you will received automated email with the link to sign up for your appointments with the researchers.
RESEARCH
Dr. Colleen Jackson-Cook ~ Virginia Commonwealth University
Collecting samples to aid in answering questions about the causes of health problems associated with mDs and to develop improved means for diagnosis.
Ages: All ages
Appointment length: 35 minutes
Meet with the researcher room: Fallen Timbers
Saliva/Blood draw Room: Red Oak 1
Children with Down syndrome and mosaicism will be asked to provide blood samples and buccal (mouth) samples. (Skin samples are done by using a toothbrush to rub the inside of the check. (Both are optional.) The parents of the child will also be asked to provide blood samples. You will receive a copy of the participant’s results at a later date.
*Please note* to participate in Dr. Jackson-Cook’s research, the participant must have a confirmed diagnosis of mDs or Ds.
Dr. Ruth Brown ~ Virginia Commonwealth University
Survey base questionnaire regarding depression and anxiety.
Ages: 10 and up
Appointment length: 30 – 45 minutes
Meet with the researcher room: Fallen Timbers B
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.
Keith Smith ~ Linda Crnic Institute for Down Syndrome Research
Research to Develop the Human Trisome Project Biobank;
Ages: ages 6 - 89
Appointment length: 45 minutes
Meet with the researcher room: Red Oak 2
Saliva/Blood draw Room: Red Oak 1
This study plans to learn more about Down syndrome and other medical conditions that are more likely to affect people with Down syndrome. The investigators want to make it easier to learn about the symptoms, causes, and long-term changes in Down syndrome and other co-occurring conditions. This will be done by collecting health data and biological samples, such as blood and DNA for use by approved research projects. Skin samples are done by using a toothbrush to rub the top of tongue. (All are optional.)
A 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 / Emily Schworer ~ Colorado State University
Observation study
Ages: 1 – 5 years old
Appointment length: 60 minutes
Meet with the researcher room: Red Oak 3
Saliva/Blood draw Room: Red Oak 1
Our 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 age.
Tracie Rosser ~ Emory University
Ages: All ages
Appointment length: 30 minutes
Meet with the researcher room: Fallen Timbers
Saliva/Blood draw Room: Red Oak 1
D360 Study: This is a nationwide study based at Emory University. The goal is to study all clinical conditions that occur in each unique individual. This information will help answer why some individuals have more serious medical outcomes due to the extra chromosome 21.
The study will consist of a 45-minute interview with the mother on health-related topics; permission for medical record review on your child to note their medical problems related to Down syndrome; a blood or saliva sample on parents and their child with Down syndrome to obtain DNA for study.
