North American centre perspectives about a multi-institutional paediatric exercise network registry

Area of Science:

• Pediatric Exercise Science
• Clinical Research Networks
• Health Informatics

Background:

• Clinical pediatric exercise laboratories play a crucial role in assessing and managing pediatric health conditions.
• The development of a coordinated network and registry for these laboratories is proposed to enhance collaborative research and standardize practices.
• Existing infrastructure and willingness to participate are key factors in establishing such a network.

Purpose of the Study:

• To survey North American clinical pediatric exercise laboratories regarding their interest in establishing a network and registry.
• To identify potential benefits and challenges associated with creating a standardized clinical pediatric exercise laboratory registry.
• To gauge the willingness of laboratories to adapt protocols for data standardization.

Main Methods:

• A survey was distributed to 53 clinical pediatric exercise laboratories across North America.
• The survey assessed interest in joining a network, willingness to modify protocols, and perceived benefits and challenges of a registry.
• Data were analyzed to determine the extent of interest and identify key concerns.

Main Results:

• A significant majority of laboratories (83.0%) expressed interest in joining a clinical pediatric exercise laboratory registry.
• A substantial proportion (73.1%) were willing to modify their protocols for standardized data collection.
• Key perceived benefits included outcomes research for congenital heart disease (CHD) and laboratory standardization/accreditation. Challenges cited were data entry burden, protocol restrictions, and leadership support.

Conclusions:

• There is strong support among North American clinical pediatric exercise laboratories for a network and registry.
• Standardization of data collection is feasible, with laboratories willing to adapt protocols.
• Addressing challenges related to data entry, protocol flexibility, and leadership is crucial for successful implementation.