Pediatric clinical research networks: current status, common challenges, and potential solutions

Abstract

Objectives: The goals were (1) to describe and to characterize pediatric clinical research networks (PCRNs) in the United States and Canada, (2) to identify PCRN strengths and weaknesses, (3) to evaluate the potential for collaboration among PCRNs, and (4) to assess untapped potential interest in PCRN participation.

Methods: Data collection included (1) initial identification of PCRNs through an Internet search and word of mouth, (2) follow-up surveys of PCRN leaders, (3) telephone interviews with 21 PCRN leaders, and (4) a survey of 43 American Academy of Pediatrics specialty leaders regarding untapped interest in network research.

Results: Seventy exclusively pediatric networks were identified. Of those, specialty care networks constituted the largest proportion (50%), followed by primary care (28.6%) and disease-specific (21.4%) networks. A network profile survey (response rate: 74.3%) revealed that ∼90% held infrastructure funding. Nearly 75% of respondents viewed cross-network collaborations positively. In-depth telephone interviews corroborated the survey data, with cross-network collaboration mentioned consistently as a theme. American Academy of Pediatrics specialty leaders indicated that up to 30% of current nonparticipants might be interested in research involvement.

Conclusions: Pediatric networks exist across the care continuum. Significant numbers of uninvolved practitioners may be interested in joining PCRNs. A strong majority of network leaders cited potential benefits from network collaboration.