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.
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).
If you are the parent (18 years of age or older) of a child (under the age of 19 years) who has Congenital Heart Disease, Down syndrome, or both Congenital Heart Disease and Down syndrome, we are inviting you to take part in a research project that we are conducting. The purpose of the study is to examine how social determinants of health (e.g. economic stability, education, health and health care, and where you live) influence child and caregiver health-related quality of life and family adaptation in three groups of families: (1) families of children with Congenital Heart Disease, (2) families of children with Down syndrome and (3) families of children with Congenital Heart Disease and Down syndrome. Participation involves completing a survey that takes 30-40 minutes to complete. If you are interested in learning more about the study, you can email Dr. Marcia Van Riper (email@example.com), who is a Professor at University of North Carolina at Chapel Hill. Or, you can click on the following link which includes additional details about the study, as well as the actual survey https://www.surveymonkey.com/r/SKTDQW3
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.