How can my child and I become involved in furthering our understanding of Down syndrome?
One of the ways experts learn more about Down syndrome is through research of individuals with the condition. These research opportunities are voluntary for families, and their purpose is to provide information that helps professionals set goals, objectives and policy, as well impact the future of individuals with Down syndrome. Below are various ways you and your child with Down syndrome can get involved in a research project or study.
What is DS-Connect™: The Down Syndrome Registry?
The National Institutes of Health-supported Down Syndrome Registry, DS-Connect™, will allow people with Down syndrome and their family members, researchers, and parent and support groups to share information and health history in a safe, confidential, online database. Users will be able to create and edit their customizable online profiles, share their profiles with other DS-Connect™ users, and set reminders for medical care and other appointments and events. DS-Connect™ will also provide access to general information about Down syndrome, as well as de-identified statistical data based on user responses to survey questions.
Who can access DS-Connect™?
Those with Down syndrome and their families will need to provide their consent for the Registry before they can create their password-protected profiles. If a user gives permission to be contacted, then clinicians and researchers who are authorized will contact these individuals to see if they are interested in participating in research studies. The Registry will comply with all regulations and laws governing privacy, personally identifiable information, and health data.
Why do we need DS-Connect™?
Creating a national registry was a primary recommendation of the 2007 NIH Down Syndrome Research Plan, which helped set goals and objectives for the Down syndrome research field. The development of DS-Connect™ was also supported by the Down Syndrome Consortium, a public-private partnership established in 2011 to further the exchange of information on Down syndrome research and to implement and update the Research Plan.
The goal for the Down Syndrome Clinical Trials Network (DS-CTN) is to carry out clinical trials more rapidly with the readiness of clinical sites and the availability of ready-to-enroll participants with Down syndrome. This is important because several promising interventions to improve health and independence for individuals with Down syndrome are ready to enter clinical trials in the next 5 years that will require hundreds of participants in each.
If you have a child with Down syndrome (6 months to 6 years of age), you are invited to participate in a study about family management of sleep problems in children with Down syndrome being conducted by Dr. Marcia Van Riper and her colleagues at the University of North Carolina at Chapel Hill. Participation in the study involves completing a survey (online or hard copy) – your child with Down syndrome does not need to have sleep problems.
Dr. Van Riper and her colleagues are interested in learning about sleep habits in children with Down syndrome and how sleep problems are managed by families. They are also interested in understanding the relationship between sleep habits and quality of life in families of children with Down syndrome. In addition, they are interested in identifying factors that influence the ability of families of children with Down syndrome to manage sleep problems.
Please email Dr. Van Riper if you would like to learn more about the study – firstname.lastname@example.org. Or, follow direct links to the surveys below (there are three versions based on the age of your child with Down syndrome).
Survey for parents of children with Down syndrome 6 months to 1 year of age
Survey for parents of children with Down syndrome over 1 year to 2 years
Survey for parents of children with Down syndrome over 2 years to 6 years
The UC Davis MIND Institute is a collaborative international research center committed to the awareness, understanding, prevention, and care of neurodevelopmental disabilities. They are currently looking for children and teens 6 to 17 years old with Down syndrome and ADHD.
Participants will be compensated $200 and will agree to:
- Cognitive and behavioral testing
- Parent and Teacher Questionnaires
- Medical exams
- A clinical trial of an FDA-approved drug
- Careful heart monitoring
For more information about this study, please contact Danielle Ponzini, research study coordinator, at 916-703-0484 or email@example.com
Looking for teens and young adults between the ages of 15-25 who have Down syndrome or an intellectual disability for a study being conducted by The University of Alabama and the University of California Davis.
People with intellectual disabilities, especially Down syndrome, may experience age-related decline earlier than others. However, as decline in some functions begins, growth in other functions may continue. Our study looks at patterns of change over time in cognition, language and everyday skills during the transition to adulthood. We are especially interested in detecting very early changes that may be linked to later Alzheimer’s disease. Participants complete cognitive tasks using picture books and iPads over 2-3 sessions, while caregivers complete interviews and questionnaires. The measures are repeated three times over a span of three years. Participants receive a $50 gift card after Time 1, a $100 gift card after Time 2, and a $150 gift card after Time 3. There is an optional blood draw and an optional brain scan. If interested, please email us at firstname.lastname@example.org or call us at 205-348-4253.
The University of Alabama and the University of Nebraska are conducting a study on reading skills in individuals with Down syndrome/intellectual and developmental disabilities/typical development, and we are looking for children/adolescents with Down syndrome/intellectual and developmental disabilities/typical development to participate! With your help, we can better understand reading abilities, including both strengths and weaknesses, in this population.
This study is looking for the following types of participants:
· individuals with Down syndrome ages 9-16 years old
· individuals with intellectual disabilities ages 9-16 years old
· typically developing children, ages 6-10 years old.
Participating children and teens will complete reading, language, and cognitive assessments. Also, parents/primary caregivers will complete a background questionnaire. Families will earn a $40 gift card for participating. For more information, please email email@example.com or contact Dr. Susan Loveall-Hague at the University of Nebraska at firstname.lastname@example.org or Dr. Fran Conners at the University of Alabama at email@example.com.
Massachusetts General Hospital Down Syndrome Program is recruiting research participants to complete a survey to help develop an instrument that directly assesses health in individuals with Down syndrome. Parents with a child with Down syndrome younger than 22 years of age are eligible to participate by completing a survey. Participants must be in the U.S., be willing to give consent, and read and write English. Survey participants will be reimbursed $25 for their time.
Very little is known about how early brain development in Down syndrome affects cognitive and behavioral outcomes. Through this study, we hope to identify clues that could lead to more individualized interventions and therapeutic targets. Families travel to one of 4 sites when their baby is 6, 12, and 24 months of age to complete developmental testing and an MRI during natural sleep (no sedation). Travel costs are covered and families receive $300 per visit. If you live in the US and have a baby with DS under 12 months of age (or are expecting), please contact the study team at firstname.lastname@example.org or visit our website at https://dsstudies.com/.