Down Syndrome Center Newsletter - Fall 2015

FROM THE DIRECTOR

Conference in India Showcases Global Interest In Healthcare Access for People with Down Syndrome

Dear Parents and Friends,

Dr. George CaponeWe may no longer believe the Earth is flat, but the globe we live on is surely shrinking.

The last decades have witnessed a proliferation of mission-driven organizations committed to bettering the lives of people with Down syndrome. Witness the creation of the NIH/NICHD Down Syndrome Consortium, DS-Connect, andDown Syndrome International (DSi).

DSi represents the global interests of over 131 affiliate organizations from around the world, mostly in developing countries. In August, DSi hosted the 12th World Down Syndrome Congress (WDSC) in Chennai, India, which I was fortunate to attend.

Dr. Capone in IndiaAttended by over 100 self-advocates and members representing over 40 countries, WDSC was an opportunity to meet families, advocates, and medical professionals from India, the Middle East, Oceana, Asia, and the Pacific Rim. The medical pre-symposium held on the day preceding the start of the Congress addressed medical concerns across the life span of those with Down syndrome. Along with two colleagues from the UK, I participated in the session on medical and mental healthcare for aging adults with Down syndrome.

Physicians and healthcare organizations now appreciate the growing urgency to articulate a clear rationale for healthcare for persons with Down syndrome that is evidence-based, cost efficient, and achievable. Available evidence must now be put into the hands of adult care physicians and families around the world. The goals are simple but considerable: 1) to maintain good health for individuals across the life span, and 2) to remove barriers to care and service delivery within existing national healthcare systems.

It’s a remarkable experience to travel halfway around the globe to learn that parents everywhere share the very same concerns about their loved ones with Down syndrome. They want the individual to have basic human rights, to be included in school, community, and society, and for their loved one to have access to basic healthcare services. Indeed the human rights, privileges, and resources that we take for granted in North America and Western Europe are not readily available in many countries in the developing world. And yet parents and families everywhere are, inspired by their children, managing to create new opportunities for their loved ones in remarkable ways.

Learn more and read their stories.

Namaste,

George T. Capone, MD


SAVE THE DATE: “RELAXATION AT THE VINE” COMING IN APRIL

Relaxation at the Vine 2015The second annual Relaxation at the Vine event to benefit the Down Syndrome Clinic and Research Center at Kennedy Krieger Institute will take place on April 2, 2016, 6 p.m. – 9 p.m. at Boordy Vineyards. Come out to enjoy the unique selection of wines Boordy Vineyards has to offer, surrounded by a beautiful landscape, all while supporting a great cause. We look forward to another fantastic evening!

Please stay tuned for for more details and ticket information.


ADULTS WITH DOWN SYNDROME NEEDED FOR STUDY ON DEPRESSION AND SLEEP DISORDERS

Kennedy Krieger is recruiting individuals with Down syndrome ages 18-30 years withmental health concerns, such as loss of functional skills, low motivation, depressed mood, social withdrawal, and motor slowing. We are also recruiting individuals with Down syndrome without mental health concerns or functional decline.

We cannot accept individuals with aggressive, disruptive, or non-compliant behaviors. All subjects will receive a comprehensive evaluation assessing general level of function, behavior and mental health, and sleep quality, as well as body shape/proportion and dietary/nutritional status. The study will include a sleep study and collection of urine, saliva, and a morning blood sample for biochemical testing.

The goal of the study is to improve our understanding of the relationship between sleep, stress, metabolism, and mental health in persons with Down syndrome. The study requires one extended visit over a two- to three-day period, including one overnight visit at the Johns Hopkins Clinical Research Center. There are minimal risks and no direct medical benefits for participating. You will receive medical test results that may be of interest to you or your physician. A cash incentive is offered for your participation.

We will try our best to accommodate your schedule.

For more information about this study, please contact the study coordinator Cathleen Weadon at 443-923-9140 or email at Weadon@KennedyKrieger.org.

Study sponsor: The Johns Hopkins Institute for Clinical & Translational Research

PI: Dr. George Capone

Protocol Number: NA_00018279


SUPPORT THE DOWN SYNDROME CLINIC AND RESEARCH CENTER

Donate to the DSCRC

Your financial gift ensures that children, adolescents, and adults with Down syndrome are able to participate in studies designed to advance treatment now and in the future.


TRAVEL UPDATE

Improving healthcare and research opportunities for people with Down syndrome is a consuming task. Dr. Capone frequently speaks to parents, health professionals, educators, therapists, and patrons about the clinic, its research projects, and the latest findings from the DSCRC. Dr. Capone presented at the following events:

12th World Down Syndrome Congress, August 15-22, 2015, Chennai, India

“Healthcare for all persons with Down syndrome”

Down Syndrome Research Foundation, October 23-24, 2015, Vancouver, B.C.

“Enhancing quality of life for people with Down syndrome”


RECENT PUBLICATIONS

Kalback, S., Pritchard, A., McCurdy, M., and Capone, G. (2015). Executive Functions among Youth with Down Syndrome and Co-Existing Neurobehavioral Disorders. Journal of Intellectual Disability Research.

Summary: Executive function (EF) deficits are a recognized component of the cognitive phenotype of youth with Down syndrome (DS). Recent research in this area emphasizes the use of behavior ratings, such as the Behavior Rating Inventory of Executive Functions-Preschool Version (BRIEF-P), to capture the real-world applications of executive functions. To account for the intellectual functioning of youth with DS, this measure is used out of age range; however, its psychometric properties when used in this fashion are unknown. The goals of this study are to evaluate psychometric characteristics of the BRIEF-P among youth with DS and to examine the pattern of EF strengths/weaknesses in children with DS and co-occurring psychiatric conditions.  Our findings offer preliminary support for use of the BRIEF-P with clinically referred youth with DS. Some scoring modifications may be necessary if the theoretically derived index scores are to be used with this population. BRIEF-P scores may offer an empirical basis for differentiating DS youth with varying behavioral profiles.

Capone, G.,  Brecher, L., Bay, M. (2015). Guanfacine Use in Children with Down Syndrome and Co-morbid Attention Deficit Hyperactivity with Disruptive Behaviors. Journal of Child Neurology.

Summary: The purpose of this study was to characterize children with Down syndrome (DS) and Attention Deficit Hyperactivity Disorder (DS+ADHD) with disruptive behaviors using the Aberrant Behavior Checklist (ABC), and to measure the treatment effects of guanfacine on maladaptive behaviors. Our findings indicate that clinically important target behaviors were reduced. Medication was generally well tolerated and the incidence of treatment emergent side-effects remained low.

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