Current Research on Down Syndrome
There are many valuable studies, both locally and internationally, involving individuals with Down syndrome as research subjects that are contributing to research on many conditions that affect those with and without Down syndrome.
One local foundation that funds research projects at Duke is the Anna's Angels Foundation which was founded by TDSN members Andy Merrills and Michelle Pfeiffer-Merrills.
The Down Syndrome Research and Treatment Foundation funds many groundbreaking medical research grants. Their mission is to "stimulate biomedical research that will accelerate the development of treatments to significantly improve cognition for individuals with Down syndrome."
The DownsEd International Organization focuses on developmental and educational research that implements the therapeutic benefit of their research directly with the children as quickly as possible to improve speech, language, reading and cognitive skills.
Read the National Institutes of Health's Research Plan on Down Syndrome (2007).
Listed below are several research projects that are currently recruiting locally
Boys with Down Syndrome, Ages 6-16
The Communication and Neurodevelopmental Disabilities Project at the Frank Porter Graham Child Development Institute (FPG) at the University of North Carolina at Chapel Hill is studying communication and speech skills of children. The information from this study will be useful for developing language interventions.
As a participant in these studies, your child will receive speech, language and developmental assessments. The visit can take place in your home, your child's school, or at FPG in Chapel Hill. You will receive compensation for your participation and a short summary of our findings.
These studies are funded by the NICHD and have been approved by the University of North Carolina at Chapel Hill Behavioral Institutional Review Board. Drs. Gary Martin and David Zajac are the principal investigators.
If you are interested in helping with this exciting project, or have any questions, please contact familystudy@med.unc.edu or call toll-free at 1-877-696-5797.
Parents of Children with Down Syndrome Needed for Survey
Titled "Adaptation and Resiliency in Families of Children with Down Syndrome", Marcia Van Riper at the University of North Carolina at Chapel Hill is conducting this study to learn about factors that influence how families respond following the birth of a child with Down syndrome.
If you are the parent of a child with Down syndrome, you are invited to participate. Call 919-966-4284 or email vanriper@email.unc.edu to get a copy of the consent form, a link to the online questionnaire and to get further information about the project.
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 their research team will have access to your information.
Volunteers Needed for Duke DS study
This study is evaluating an investigational study drug to see if it can improve communication, understanding and the performance of daily living skills in children with Down Syndrome. As a qualified participant, your child will receive all study-related procedures and study drug at no cost.
To qualify, your child must be:
Your child will be screened for communication skills and will need to fall within a certain range to qualify for study participation. You or a regular caregiver must accompany your child to each study visit.
If you are interested in more information, call:
Jane Ann McKillop, MS, CGC at Duke University Medical Center, (919) 668-4576.
Volunteers Needed for UNC's Sensory Experience Project
UNC's Sensory Experience Project is currently recruiting children with Down syndrome ages 2-12 years to participate in a research project. This project will study children's sensory experiences, the impact of these experiences on children and families, and changes in these experiences over time. Parents who participate in this study will complete a packet of questionnaires and some interviews about their child.
The child will receive a battery of developmental and play-based sensory assessments. In addition, some families that qualify may be asked to participate in other components of the project, including an analysis of videos from the infancy period, an EEG study that analyzes brain waves, and/or an eye-tracking task to learn more about the nature of sensory responses to novel auditory or visual stimuli. The time commitment varies (5 to 9 hours) depending upon which components you participate in.
Benefits:
Mileage reimbursement is available for families who are traveling more than 20 miles each way
For more information about The Sensory Experiences Project (SEP), visit www.med.unc.edu/sep.
If you are interested in participating in the project, please call toll free at 1-800-514-9981 or e-mail us at sep@unc.edu.
SEP is funded by the National Institute of Child Health & Human Development (Grant# HD42168). The Principal Investigator is Dr. Grace Baranek. This study has been reviewed and approved by the UNC Biomedical Institutional Review Board (IRB # 07-1926).
Brain Development in Infants with Down Syndrome
UNC Chapel Hill along with the Carolina Institute for Developmental Disabilities is carrying out a Study of Brain Development in Infants with Down Syndrome.
This study, funded by the Foundation of Hope is currently searching for children to participate in the South Eastern US who meet the following criteria:
What Will Happen If You Participate
Why You Should Participate
You and your child will be a part of this important study that will help provide important information about brain growth and development of children with Down syndrome, and may give clues that could eventually improve the outcomes for children diagnosed with Down syndrome.
You will also receive reports on the assessments completed with your child and have access to some of the leading researchers in child development.
How You Can Help
You and your child can be significant contributors to the success of research!
Participating in this study is not the only way to get involved. Please consider sharing this information with your friends and family.
If you would like more information about this study, please call 1-800-793-5715. You could also send an email to IBISNetwork@gmail.com.
Views: 2745 | Modified by: Leigh Menconi on 02/28/12
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