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.
Family Factors and Quality of Life in Children and Adolescents with Down Syndrome
Who can participate?
If you are a parent of a child with Down syndrome aged 4-21 years and live in the same household as the child, you are invited to participate. Also, you must understand English, be at least 18 years old, have an email account, and have access to the internet.
What will you be asked to do?
You will be given an individualized electronic link for online survey (Qualtrics), which entails the consent form and all the questionnaires: general family information, family demand, family appraisal, family resources, family coping, and children’s quality of life. It will take approximately 30-40 minutes. Once you complete them, the link will become inactive.
This project has been reviewed by the institutional review board for human subjects research at the University of North Carolina at Chapel Hill. If you agree to take part, all information you give will be confidential. No-one except the research team will have access to your information. Many thanks for your kind consideration.
Anna Lee, RN, PhD(c) ~ University of North Carolina at Chapel Hill
Marcia Van Riper, PhD, RN, FAAN, Professor & Chair, Family Health Division ~ University of North Carolina at Chapel Hill
If you wish to be involved in this research, please email email@example.com
Down syndrome and Nutritional Supplements
This questionnaire from Children’s National Health System is about the use of dietary and nutritional supplements specifically in children with Down syndrome. The nutritional products that are the focus of this survey are currently NOT recommended for patients with Down syndrome, but we are aware that some parents do decide to use them for their children. Researchers would like to learn how commonly these products are used and if parents have noted any improvement, or any side effects from them. Your answers are completely anonymous.