Research

 

http://dsrg.arizona.edu/

UA news press release about the center:

http://uanews.org/story/ua-established-international-center-down-syndrome-research

Established in 2007, the Down Syndrome Research Group (DSRG) is led by Regents Professor Lynn Nadel and Assistant Professor of Psychology and the Sonoran UCEDD, Jamie Edgin. Professor Nadel is an internationally recognized expert on cognition in DS, with over 20 years experience on this topic. Dr. Edgin is also recognized for her work in the field and received the 2008 NDSS Charles Epstein award for Down Syndrome Research. The group’s work is done in collaboration with other major centers for Down syndrome research nationally and internationally, including Johns Hopkins University, Emory University, and UC Davis (the Mind Institute).

The group is currently pursuing research in the following areas:
1. The basis for variability in cognitive function in children with DS
2. The development of cutting edge cognitive assessments for use in outcome studies, including clinical trials
3. The early development of language skills in DS
4. The relationship between sleep apnea and cognition and behavioral outcome
5. The brain basis for cognitive challenges in children and adults with DS, both through high density EEG and targeted neuropsychological assessment

In addition to this internationally recognized program of research, in 2012 we established DSA CARES (Down Syndrome Arizona- Clinical Care, Advocacy, Research, and Education). DSA CARES is a university-community partnership set-up to benefit individuals with Down Syndrome and their parents and caregivers. Given the momentum generated from recent treatment findings in this syndrome, the time is NOW to team together to support those with Down syndrome! This summer DS CARES started an internship for those with DS at the UA and we are hoping to expand our community outreach programs in new directions moving forward.
Currently, we have several funded studies in the DSRG laboratory at the University of Arizona. Over the last several years we have received generous funding from the Down Syndrome Research and Treatment Foundation and Research Down Syndrome. We are also funded by the Thrasher Pediatric Research Fund and the Lejeune Foundation. Our current studies include:

1) measurement validation studies to determine the best cognitive assessments to use in outcome studies of treatments in Down Syndrome. In 2010 we published the “Arizona Cognitive Test battery for Down Syndrome” which is currently in use in a number of clinical trials http://uanews.org/node/23348. Currently, we are developing a battery of tests for younger children (ages 5-11 years) and serving as one site in a worldwide study sponsored by F. Hoffman La Roche to validate outcome assessments in older children and young adults (ages 11-30 years).

2) We are examining the impact of sleep apnea on cognitive and behavioral outcomes in children with DS ages 2-18 years old. An Arizona Public Media piece on our work can be accessed here https://www.azpm.org/p/top-health/2011/6/27/1830-sleep-and-down-syndrome/. We are also very interested in processes of consolidation and abstraction during sleep and have initiated new work to determine the impact of variations in sleep on memory and learning in DS.

3) We are a site of the Down Syndrome Phenotype Project, one of the largest studies to examine the impact of health and biological factors (i.e. genetics) on cognitive outcomes in Down Syndrome to date. Funded by the Down Syndrome Research and Treatment Foundation, this study is conducted across six sites in the US, including Arizona, Johns Hopkins, Emory University, UC Davis, Oregon Health Sciences Center, and Children’s National Medical Center.

4) Individuals with DS show difficulties with memory and learning. We would like to understand the brain basis for these effects. We are funded by the DSRTF, Research Down Syndrome, and the Jerome Lejeune foundation to assess patterns of memory function using high density EEG. This method is a noninvasive technique to measure brain activity.

5) Given there is so much focus on the function of memory systems in Down syndrome and in mouse models of DS, we are looking at the types of memory and learning that may be spared or compromised in humans with DS.

 

The UA hopes to grow the Down Syndrome Research group program and DSA CARES. To make a gift to this program in the College of Science, visit http://cos.arizona.edu/gift/, click “make a gift” and choose “Down Syndrome Research Program.” We also need volunteers for our studies, aged infancy to adulthood, both with Down syndrome and those who do not have Down syndrome. A number of our studies require baseline data from those without Down syndrome, particularly controls. To help please email jedgin@email.arizona.edu or call 520-626-0244

 

A parent quote about our work:

“Our experience with the Down Syndrome Research Group has been very positive.  Their staff and students were great with my kids.  They are very patient and encouraging while administering the test and make it fun so the kids don’t even realize that they’re testing.
Their research has also been beneficial to us personally, especially for our son Isaiah (Down syndrome, autism and ADHD).  As a little boy, Isaiah would snore loudly, wake up gasping for air, and he always seemed tired and grumpy.  His ENT suggested removing his tonsils and adnoids to help him breath better while sleeping.  After the surgery, we noticed some improvement with the snoring and breathing, but he was still tired and irritable.  We figured that was just due to his diagnosis and we’d just have to live with it.
When DSRG asked if we’d like to have our kids participated in a sleep study, we said yes.  We thought it would be good for our daughter, but never imagined that Isaiah still had sleep problems.  So, we were very surprised when we received the results from the DSRG.  We were told we should followed up with his pediatrician and have a formal sleep study done.  Isaiah was diagnosed with Obstructive Sleep Apnea and was prescribed a CPAP machine.  Who would have thought that a little machine like that could make such a big difference!  He no longer snores, he’s happier, and more alert, (we’ve been able to cut back on his medication for ADHD).
We are very grateful to the DSRG for taking an interest in people with down syndrome and for trying to make life better for them.  They have made a big difference in Isaiah’s life which in turn has also made our live’s better”.

 

The mission of the Down Syndrome Research Foundation is to empower individuals with Down syndrome to reach their full potential throughout life by pioneering and providing educational programs and services, grounded in foundational research. Working with researchers, professionals and families, we are a bridge between research and practice.

At the Down Syndrome Research Foundation, we investigate best practices and initiate and participate in research studies to gain a better understanding of the learning styles of individuals with Down syndrome. Using behavioural assessments and magnetoencephalography (MEG), we are gaining new insight into how people with Down syndrome see the world around them and process information. Such insights are enabling us to develop effective programs appropriate to each person – programs that maximize academic, social, health and language development.

Our programs are continually evolving as we gain new understanding through our ongoing research. We offer a wide variety of educational opportunities to children and young adults with Down syndrome, including ground-breaking reading and communications programs, speech therapy, music in motion, summer school and transitions programs which prepare our students to live full and fulfilling lives.

Down Syndrome Research

  • The Linda Crnic Institute for Down Syndrome was founded in 2008. It is the first global institute to encompass basic research, clinical research and clinical care specifically for people with Down syndrome. The mission of the institute is to eradicate the medical and cognitive ill effects associated with Down syndrome. Significantly improving the lives of people with Down syndrome is a major focus. The institute partners are the University of Colorado Anschutz Medical Campus, the University of Colorado Boulder and Children’s Hospital Colorado
  • The Down Syndrome Research and Treatment Foundation is dedicated to finding a treatment to improve cognition including learning, memory and speech for individuals with Down syndrome.  Since our founding in 2004 we have become the leading private source of funding in the United States for Down syndrome cognition research
  • Research Down Syndrome (RDS) is a non-profit foundation that supports Down syndrome cognitive research, an area that in the last 5 years has experienced great advances towards developing biomedical therapies to treat the cognitive impairment of people of all ages with Down syndrome. The potential of these treatments to address Down syndrome cognitive dysfunction is tremendous – improving memory, learning and communication – and expanding and enhancing life opportunities for these individuals.
  • The University of Arizona We offer diverse opportunities for teacher professional development, and a large variety of resources for classroom use and teacher support. Science and math faculty offer courses for teachers during summer and winter sessions. Topics range from marine ecology in the Galapagos Islands to the biology of tree rings and the history of fire in the west. We offer a Master’s degree in General Biology, and summer research internships for those who want to do research outside of a formal degree program. Elementary and secondary school students experience marine biology in the desert as part of the Marine Discovery program, and undergraduate “science connectors” visit classrooms with a variety of lesson plans, and hands-on science materials for students to exploree

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