NIH is working with PRISMS to develop syndrome specific growth curves for SMS. Data gathered to date on 68 children with SMS show the following growth patterns. Most infants with SMS are born at term and have normal birth parameters for length, weight and head circumference.

During the first year of life, Infants with SMS show a decline in weight & height from normal birth range to less than or equal to 5%tile;
By age 8-9 years, heights are within the normal range (approx 25%tile) and weights are higher for boys than girls;
Weight gain to levels suggesting obesity (>95%tile) is frequently noted after age 9 years with onset of puberty.

Additional growth data is needed to complete the project, especially for children from age 4 years into their teens and final adult height. Parents willing to provide growth measurements on their child with SMS (heights, weights and if available head circumference) are encouraged to down load the SMS Growth Curve form.

For more information contact:

Ann C.M. Smith, MA, DSc (Hon), Adjunct Principal Investigator
Office of Clinical Director, National Human Genome Research Institute, NIH

Bldg 10, Room 10C103, 10 Center Drive, MSC 1851
Bethesda, MD 20892-1851

Phone: 301-435-5475
Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Closed Research Studies

Data analysis is now being conducted on the research projects listed below. These projects are now closed and the finding will be reported on the PRISMS website.

Complimentary and Alternative Therapies, (CAM Study): The use of complementary and alternative medicine in patients with Smith-Magenis syndrome. This study will help to provide data to the SMS community on what kinds of complementary and alternative therapies may be helpful in raising children with SMS.

Principal Investigator: Rio Friday
Co-investigators: Dr. Susan Levy/CHOP, Ann Smith/NIH and PRISMS PAB, Dr. Toni Pollin/University of Maryland, Shannan DeLany Dixon/University of Maryland

Siblings of Children with Neurodevelopmental Disabilities: An investigation of well-sibling intra-familial relationships.

Goals: To examine well-sibling and parental perceptions of sibling relationships in families with at least one well-child and a child with SMS, Down, or Williams syndrome. This study involves the evaluation of social and psychological impacts of well-siblings of individuals with neurodevelopmental disabilities, including Smith-Magenis syndrome, Williams syndrome, or Down syndrome.

Principal Investigators: Melanie S. Moshier, Timothy P. York, and Sarah H. Elsea, PhD, Department of Human and Molecular Genetics and Department of Pediatrics Virginia Commonwealth University, Richmond, VA