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:
- Research Opportunities
- DS-Connect: Down Syndrome Registry
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.
- University of North Carolina at Chapel Hill
“Adaptation and Resiliency in Families of Individuals with Down Syndrome”
We are inviting you to take part in a research project that we are conducting with parents of individuals with Down syndrome. The purpose of the study is to learn about factors that influence how families respond following the birth of a child with Down syndrome. This study is part of a larger cross-cultural study we are conducting in many different countries. To date, over 1300 parents from more than 10 countries have taken part in the study. If possible, we would like to collect data from more than 2000 parents.
Who can participate?
If you are the parent of an individual with Down syndrome (any age), you are invited to participate. If you have a spouse or partner, he or she is also eligible to participate.
What will we ask you to do?
We will ask you to complete an online survey (this should take approximately 20-30 minutes) and if you would like to be interviewed, we will try to do this. Generally, the interview will be a telephone interview; however, if you live in North Carolina, we are more than willing to interview you in your home. We expect the phone call or in-person meeting will take approximately 60-90 minutes. After you talk with us and complete the online survey, we may contact you a second time if we need to clarify any information with you.
The project has been approved 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 our research team will have access to your information.
If you wish to be involved in this research, please either email (firstname.lastname@example.org) or call 919-966-4284.
You also have the option of using one of the links below to access the survey directly (there is one link for mothers and one link for fathers – the surveys are exactly the same, but if two people use the same computer to complete the survey, they need to use different links). If you agree to be interviewed, we will arrange to do the interview at a time that is convenient for you.
Thank you to all who have participated so far! We really appreciate you taking time out of your busy days to participate. We plan to start publishing some of our findings very soon. We are also hoping to share our findings at a future National Down Syndrome Congress Conference. In 2016, we will begin a new study exploring how the behavior of a family member with Down syndrome influences and is influenced by parental and family well-being.
Many thanks for your kind consideration,
Marcia Van Riper, RN, PhD
Professor, Chair, Family Health
Past President International Family Nursing Association
Fulbright Scholar Ireland 2012-2013
University of North Carolina at Chapel Hill
- University of North Carolina at Chapel Hill en Español
“Adaptación y resiliencia de los padres que tienen un hijo(a) con síndrome de Down”.
Te invitamos a participar en un estudio de investigación para padres de familia que tienen un hijo(a) con síndrome de Down. El objetivo de este estudio es comprender más de cerca los factores que influyen en la manera que una familia responde al nacimiento de un hijo(a) con síndrome de Down. Este estudio es parte de un proyecto multicultural que se realiza en distintos países. Hasta la fecha han participado más de 1300 padres de más de 10 países. Nos gustaría recaudar información de más de 2000 padres.
¿Quién puede participar?
Te invitamos a participar si eres padre o madre de un hijo con síndrome de Down (no importa la edad de tu hijo). Si tienes un esposo(a) o pareja, él/ella también es elegible para participar.
¿Cómo puedes participar en el estudio?
Se te pide llenar un conjunto de cuestionarios (te llevará completarlos aproximadamente 20-30 minutos). Además, se te puede hacer una entrevista telefónica siempre que estés dispuesto(a) a ser entrevistado(a). Si vives fuera de Carolina del Norte, se hará por teléfono. Si vives en Carolina del Norte, se puede hacer la entrevista en persona o por teléfono. Si estás dispuesto(a) a ser entrevistado(a), la entrevista durará aproximadamente 60-90 minutos. Después de completar los cuestionarios y hacer la entrevista, es posible que te contactemos una vez más si necesitamos clarificar alguna información.
Este proyecto fue aprobado por el consejo de revisión institucional de investigaciones con sujetos humanos de la Universidad de Carolina del Norte de Chapel Hill. Toda la información que proporciones se mantendrá confidencial. Ninguna persona, salvo nuestro equipo de investigación, tendrá acceso a ella.
Si deseas participar en este estudio, por favor envía un correo electrónico a email@example.com o comunícate al 919-966-4284.
También, puedes acceder al cuestionario a través de los siguientes enlaces. Los cuestionarios son iguales, pero cada participante necesita su propio enlace ya que dos personas en una familia no pueden utilizar el mismo enlace. Si estás dispuesto(a) a ser entrevistado(a), se hará la entrevista en un lugar y a la hora que tu prefieras.
¡Gracias a todos los que han participado hasta ahora! Pronto publicaremos algunos de los resultados de la investigación. También esperamos compartir nuestros hallazgos en una futura Convención del National Down Syndrome Congress. En el 2016, vamos a comenzar un nuevo estudio por medio del cual exploraremos cómo el comportamiento de un miembro de la familia con síndrome de Down influye y es influenciado por el entorno familiar.
Un cordial saludo,
Marcia Van Riper, RN, PhD
University of North Carolina at Chapel Hill
- University of Arizona Sleep Study
Arizona Sweet Dreams Study: Tracking Early Sleep as a Marker for Brain Development and Learning (For Toddlers Age 1-2 years)
Researchers at The University of Arizona are enrolling toddlers aged 1-2 years with Trisomy 21 from across the United States.
This longitudinal study examines the intersections of health, sleep, language development, behavior and cognition in children with Down syndrome. They want to determine whether and how health and sleep might relate to children’s learning.
When and for how long?
Two time points, at 18 and 24 months. At each age, children wear a watch-like movement recorder on their leg for 7 days and a small sound recording device and “Owlet” sock-mounted baby monitor for 1 night to track sleep quality and language. Parents complete interviews and questionnaires regarding demographic characteristics, health, sleep, behavior, language and general development.
The study will take place in your home. The researchers deliver measurement equipment and questionnaires to you by mail and conduct ~2-hour interviews via telephone at each age.
As a token of their appreciation, you will also be compensated with gift cards for your time and effort. They will also provide feedback on your child’s language, sleep, and behavior.
Please fill in the contact information you would like to send to the study coordinator. The information you type in this form will be sent directly to the study coordinator, who will contact you directly.
If you would prefer to contact the study coordinator without using this form, you may do so using this contact information:
Dr. Jamie Edgin,
DSRG@email.arizona.edu and/or firstname.lastname@example.org
- Case Western Reserve
Phase II, Multicenter, Sixteen-Week, Randomized, Double Blind, Placebo-Controlled Evaluation of the Efficacy, Tolerability and Safety of Memantine Hydrochloride on Enhancing the Cognitive Abilities of Adolescents and Young Adults with Down Syndrome — Study Subjects Wanted
A team of medical doctors and psychologists at the Case Western Reserve University, University Hospitals, and the Cleveland Clinic is investigating the effects of memantine on individuals with Down syndrome who are between the ages 15 and 32. Memantine is a medication FDA-approved for the treatment of Alzheimer’s disease, but it is not approved for use in persons with Down syndrome. This study was designed to examine whether or not this medication is safe and if it can improve memory and learning skills in adolescents and young adults with Down syndrome.
This study requires the participant and his or her primary caregiver to complete five to seven outpatient visits to University Hospitals in Cleveland, Ohio. Psychological and medical tests will take place during the visits. The tests, medication, and medical care related to the study are provided free of charge. Parking will be validated, and mileage can be reimbursed for those traveling 20 miles or more to come to the study.
If you, or someone you know, would be interested and meet the following requirements:
• 15-32 years of age
• medically diagnosed with Down syndrome
• in good general health and not pregnant
• able to swallow medicine capsules (crushing of capsules will not be permitted)
• have a reliable caregiver or family member who agrees to come with the participant to all visits, provide information about the participant, and ensure compliance with the medication schedule
• know enough English to be capable of reliably completing study tests
The study Principal Investigator is Alberto Costa, MD, PhD
Department of Pediatrics, Division of Pediatric Neurology
Case Western Reserve University and University Hospitals
For more information, please call or E-mail the study coordinator, Ms. Melissa Stasko (216-844-7281, Melissa.Stasko@case.edu)
- DS-Connect: Down Syndrome Registry