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

Area of Science:

• Pediatric endocrinology
• Clinical informatics
• Genetics and rare diseases

Background:

• Pediatric growth charts are crucial for monitoring child development and healthcare.
• Syndrome-specific growth charts are needed for disorders with atypical growth patterns.
• Recent development of standardized growth curves for infants with Prader-Willi syndrome (PWS) from birth to 36 months.

Purpose of the Study:

• To describe the implementation experiences of electronic growth charts in two medical centers for infants with rare disorders, using PWS as a case study.
• To highlight the importance of syndrome-specific growth charts in electronic health record (EHR) systems.
• To address the challenges posed by the lack of readily available syndrome-specific growth charts for other rare conditions.

Main Methods:

• Review of implementation processes for electronic growth charts at two medical centers.
• Focus on the integration of PWS-specific growth charts into EHR systems.
• Analysis of challenges encountered by EHR personnel and healthcare providers.

Main Results:

• Electronic health record (EHR) systems can incorporate interactive, automated growth charts for improved clinical monitoring.
• The American Academy of Pediatrics recommends the integration of syndrome-specific growth charts where feasible.
• Experiences at two centers illustrate varying stages of incorporating these tools for rare disorders like PWS.

Conclusions:

• Integrating syndrome-specific electronic growth charts, exemplified by PWS, enhances pediatric care within EHR systems.
• The absence of such charts for other rare disorders creates significant obstacles for healthcare providers and EHR implementation.
• Standardized, accessible syndrome-specific growth charts are essential for effective management of children with rare diseases in modern healthcare settings.