Published online December 29, 2008
PEDIATRICS Vol. 123 No. 1 January 2009, pp. 407-412 (doi:10.1542/10.1542/peds.2007-2875)
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SPECIAL ARTICLE

Models of Comprehensive Multidisciplinary Care for Individuals in the United States With Genetic Disorders

Scott D. Grosse, PhDa, Michael S. Schechter, MD, MPHb, Roshni Kulkarni, MDa, Michele A. Lloyd-Puryear, MD, PhDc, Bonnie Strickland, PhDc and Edwin Trevathan, MD, MPHa

a National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, Georgia
b Department of Pediatrics, Emory University, Atlanta, Georgia
c Maternal and Child Health Bureau, Health Resources and Services Administration, Rockville, Maryland

Approaches to providing comprehensive coordinated care for individuals with complex diseases include the medical home approach, the chronic care model in primary care, and disease-specific, multidisciplinary specialty clinics. There is uneven availability and utilization of multidisciplinary specialty clinics for different genetic diseases. For 2 disorders (ie, hemophilia and cystic fibrosis), effective national networks of specialty clinics exist and reach large proportions of the target populations. For other disorders, notably, sickle cell disease, fewer such centers are available, centers are less likely to be networked, and centers are used less widely. Models of comanagement are essential for promoting ongoing communication and coordination between primary care and subspecialty services, particularly during the transition from pediatric care to adult care. Evaluation of the effectiveness of different models in improving outcomes for individuals with genetic diseases is essential.

Key Words: genetic services • care coordination • health care disparities • health care utilization

Abbreviations: CDC—Centers for Disease Control and Prevention • CF—cystic fibrosis • HRSA—Health Resources and Services Administration • HTC—hemophilia diagnostic and treatment center • SCD—sickle cell disease

Accepted Apr 24, 2008.


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