Introduction to The Down Syndrome Clinic

Clinical Program:

Children with Down Syndrome are children first, each child a unique person with individual strengths. The Down Syndrome Clinic is committed to working with you to help your child reach his or her full developmental potential and function as independently as possible in all aspects of family, school and community life.

The initial evaluation through the Down Syndrome Clinic will be performed by a developmental pediatrician and one or more disciplines, depending upon your child's age, individual needs and other medical conditions. By participating in the Down Syndrome Clinic, preventive medical screening, initial and follow-up developmental assessment, and ongoing therapy are available to you and your child at a single location. We offer a coordinated and comprehensive program of services in an effort to maximize convenience to parents who are working to meet the needs of their child. In order to provide optimal care, we focus on two general areas: medical consultation and screening and developmental assessment with therapy and parent training.

Medical Consultation and Preventive Medical Screening. To avoid some of the predictable medical conditions which are commonly seen in Down Syndrome, preventive medical screening is performed. We also provide consultative medical evaluation for adults. If specific medical problems are detected, referrals to specialists at the Kennedy Krieger Institute or the Johns Hopkins Hospital are easily made.

Developmental Assessment with Therapy and Parent Training. To accurately monitor each child's developmental progress and level of function, multidisciplinary evaluations are conducted at regular intervals. This information is used to inform parents, physicians and other health professionals working with the child to help formulate and individualize therapeutic programs. Referrals may be made either within the Kennedy Krieger Institute or to a community- or home-based program.

Training Program:

In addition to the direct clinical services we provide, we are committed to developing training programs designed to educate parents and health care professionals and to disseminating accurate information about this condition.

One aspect of our training program is designed to provide medical professionals with a focused experience which allows them to integrate medical, developmental and scientific perspectives on Down Syndrome. Pediatric fellows from the Department of Developmental Pediatrics at Kennedy Krieger Institute rotate through the Down Syndrome Clinic and work under the supervision of the director.

A training curriculum designed for physical and occupational therapists and other professionals working in early intervention has also been established. The emphasis of this program is on facilitating gross motor and fine motor skills.

Because parents are the best and strongest advocates for their child, we are committed to organizing one-day seminars on Down Syndrome designed specifically for the parents of our patients. The conference typically addresses a variety of topics, including medical, developmental, educational, social and emotional issues.

Research Program:

We are committed to research that explores the genetic and neurobiologic bases of the cognitive impairment associated with Down Syndrome. Research activities allow us to contribute to the body of knowledge already in existence and to keep up with new findings in the field. These activities help to increase our understanding of Down Syndrome and have the potential to produce new treatments.

There are a number of clinical research projects being conducted at this time. One study is examining the particular pattern of cognitive and language development seen in children with Down Syndrome and correlating this with detailed morphometric analysis of the brain, obtained using Magnetic Resonance Imaging (MRI). We are also conducting pilot studies of the investigational drug, piracetam, in children from five to 10 years to determine its effects on memory and language.

After your child is seen in the Down Syndrome Clinic, you may be contacted regarding your interest in participating in one of these research studies. The decision to participate is entirely up to you; your decision does not affect your ability to receive quality care at the Kennedy Krieger Institute or Johns Hopkins Hospital.

George T. Capone, MD
Director, Down Syndrome Clinic

The article above is reproduced from the Down Syndrome Guide disseminated by the Down Syndrome Clinic at Kennedy Krieger Institute. In accordance with federal copyright restrictions, the contents of this booklet may not be reproduced by photocopying or any other means without written permission from the copyright holder. © 1999 George Capone, MD.

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