What is DS-Connect™: The Down Syndrome Registry?
The NIH-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.
When will DS-Connect™ be available?
DS Connect™ was launched in September 2013.
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.
Vanderbilt Kennedy Center
For a list of current studies related to Down syndrome, go to this website: http://kc.vanderbilt.edu/site/services/studyfinder/studyindex.aspx?id=15
“Adaptation and Resiliency in Families of Children with Down Syndrome”
We are inviting you to take part in a research project that we are conducting with parents of children 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 will be conducting in many different countries. To date, parents from over 1200 families from more than 10 countries, have taken part in the study. If possible, we would like to collect data from over 2000 families.
Who can participate? If you are the parent of a child with Down syndrome, 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, we will interview you. 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 me at 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.
Link for mothers: https://www.surveymonkey.com/s/9ZBK3SW
Link for fathers: https://www.surveymonkey.com/s/9ZH2R2M
Thank you to all who have participated so far! In early 2015, 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
Associate Professor, Chair, Family Health
President International Family Nursing Association
University of North Carolina at Chapel Hill
“Adaptación y resiliencia de familias con niños con síndrome de Down”.
Le invitamos a participar en un estudio de investigación para padres de familia con niños con síndrome de Down. El objetivo de este estudio es aprender más acerca de los factores que influyen en cómo responde la familia al nacimiento de un niño con síndrome de Down. Este estudio es parte de un proyecto multicultural que se realizará en por lo menos seis países.
¿Quién puede participar? Si usted es el papá o la mamá de un niño con síndrome de Down, le invitamos a participar. Si usted tiene esposo(a) o pareja, él/ella es elegible para participar también.
¿Qué le pediremos hacer? Se le pide rellenar un conjunto de cuestionarios (le llevará completarlos aproximadamente 20-30 minutos). Además, se le puede hacer una entrevista siempre que esté dispuesto(a) a ser entrevistado(a). Si vive fuera de Carolina del Norte, se hará por teléfono. Si vive en Carolina del Norte, se puede hacer la entrevista en persona o por teléfono. Si está 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 le 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 usted ofrece se mantendrá confidencial. Ninguna persona, salvo nuestro equipo de investigación, tendrá acceso a su información.
Si usted desea participar en este estudio, por favor envíeme un correo electrónico al email@example.com o llámeme al 919-966-4284. También, puede 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 usar el mismo enlace. Si usted está dispuesto(a) a ser entrevistado(a), se hará la entrevista en un lugar y a la hora que usted escoja.
Enlace para mamas http://www.surveymonkey.com/s/ZJ6C3YT
Enlace para papás http://www.surveymonkey.com/s/93QXKQC
Muchas gracias por su consideración.
Marcia Van Riper, RN, PhD
The Kennedy Krieger Institute is recruiting children with Down syndrome to participate in an NIH-funded study to identify genetic and environmental factors related to congenital heart disease in Down syndrome. The study will be conducted at the Kennedy Krieger Institute in Baltimore, as well as at Emory University in Atlanta. For more information, please contact Charnan Koller, Research Coordinator, at firstname.lastname@example.org or 443/923-9131 or 800/873-3377, extension 9131.
The Center for Autism and Related Disorders at the Kennedy Krieger Institute is recruiting children with Down syndrome, who are between the ages of 36 and 54 months to participate in a study looking at the development of memory and learning in children. The study requires two visits, each lasting approximately 2.5 hours, where your child will participate in play-based, structured activities. One additional parent visit is needed to complete parent interviews, however, these interviews can be done over the phone. For your participation, you will receive a written report of your child’s development on the standardized assessments. There is no charge to participate. If you are interested in participating, please contact our research hotline at 1-877-850-3372. This phone number is connected to a voicemail box that is checked daily by one of our research staff. Please leave a message stating that you are interested in the “Development of Relational Awareness” study along with your contact information and we will return your call. We look forward to working with you in the near future!
Research on Learning and Language in Youth with Down Syndrome at the University of Alabama
Fran Conners, Ph.D., Principal Investigator.
We are looking at aspects of learning and cognition that are related to language difficulties in youth with Down syndrome. Youth with Down syndrome and other intellectual disabilities age 10-21 may be eligible for the study if they
- use speech as their primary form of communication with English as their first language
- have good hearing and vision
- have a parent/guardian who can also participate by completing background information forms.
Participants come to our lab to complete testing over 2-3 testing sessions. Compensation for time and effort as well as travel expenses will be provided, and the study is fully approved for research ethics by the University of Alabama Institutional Review Board. We would love you to come see us in Tuscaloosa! Call or email us to discuss the study further. 205-348-4353 or email@example.com.