Development and implementation of electronic growth charts for infants with Prader-Willi syndrome.

Pediatric growth charts are used to monitor children's growth and development, and assist in healthcare delivery and supervision. Researchers have developed syndrome-specific growth charts for several disorders in which affected children grow differently than unaffected children. Typical standardized growth curves have been recently reported in non-growth hormone treated infants with Prader-Willi syndrome (PWS) of both genders from birth to 36 months of age to support monitoring growth and nutritional status during infancy, and to guide growth hormone treatment and follow up. Electronic health record (EHR) systems serving pediatric populations can now incorporate interactive automated growth charts to assist the healthcare providers in clinical settings to monitor growth. The American Academy of Pediatrics has recommended that EHR systems incorporate syndrome-specific growth charts where feasible. This manuscript describes the experiences at two medical centers at different stages of incorporating electronic growth charts into the medical records on infants with rare disorders, using PWS as an illustration. The absence of readily available and accessible syndrome-specific standardized growth charts in other disorders causes challenges for EHR personnel and for healthcare providers who care for these children particularly in the growing electronic medical record environment.