The CANadian Pediatric Weight management Registry (CANPWR): lessons learned from developing and initiating a national, multi-centre study embedded in pediatric clinical practice
- PMID: 30025530
- PMCID: PMC6053829
- DOI: 10.1186/s12887-018-1208-6
The CANadian Pediatric Weight management Registry (CANPWR): lessons learned from developing and initiating a national, multi-centre study embedded in pediatric clinical practice
Abstract
Background: There is increasing recognition of the value of "real-world evidence" in evaluating health care services. Registry-based, observational studies conducted in clinical settings represent a relevant model to achieve this directive. Starting in 2010, we undertook a longitudinal, observational study (the CANadian Pediatric Weight management Registry [CANPWR]), which is embedded in 10 multidisciplinary, pediatric weight management clinics across Canada. The objective of this paper was to share the lessons our team learned from this multi-centre project.
Methods: Data sources included a retrospective review of minutes from 120 teleconferences with research staff and investigators, notes taken during clinical site visits made by project leaders, information from quality control processes to ensure data accuracy and completeness, and a study-specific survey that was sent to all sites to solicit feedback from research team members (n = 9). Through an iterative process, the writing group identified key themes that surfaced during review of these information sources and final lessons learned were developed.
Results: Several key lessons emerged from our research, including the (1) value of pilot studies and central research coordination, (2) need for effective and regular communication, (3) importance of consensus on determining outcome measures, (4) challenge of embedding research within clinical practice, and (5) difficulty in recruiting and retaining participants. The sites were, in spite of these challenges, enthusiastic about the benefits of participating in multi-centre collaborative studies.
Conclusion: Despite some challenges, multi-centre observational studies embedded in pediatric weight management clinics are feasible and can contribute important, practical insights into the effectiveness of health services for managing pediatric obesity in real-world settings.
Keywords: Cardiometabolic health outcomes; Childhood obesity; Cohort study; Pediatric; Research methodology; Treatment; Weight management.
Conflict of interest statement
Ethics approval and consent to participate
The CANPWR study was approved by the following Research Ethics Boards: Hamilton Integrated Research Ethics Board, Conjoint Health Research Ethics Board (Calgary, Alberta), Research Ethics Board Trillium Health Partners, Health Research Ethics Board - Health Panel (Edmonton, Alberta), Children’s Hospital of Eastern Ontario Research Ethics Board, The Hospital for Sick Children Research Ethics Board, University of British Columbia Clinical Research Ethics Board, CHU Sainte-Justine Research Ethics Board, McGill University Health Centre Research Ethics Board – Pediatrics.
Written consent was received from the legal guardian of each study participant (all under 18 years of age). In addition, children age 5–17 years provided assent (a common practice with Canadian Children’s Hospital Research Ethics Boards).
Consent for publication
Not applicable.
Competing interests
KM Morrison – No competing financial interests exist.
GDC Ball – No competing financial interests exist.
J Ho – No competing financial interests exist.
P Mackie – No competing financial interests exist.
I Zenlea – No competing financial interests exist.
A Buchholz – No competing financial interests exist.
JP Chanoine – No competing financial interests exist.
M Tremblay – No competing financial interests exist.
J Hamilton – Recipient of unrestricted research funds from the SickKids University of Toronto Mead Johnson Chair in Child Nutritional Science.
AM Laberge – No competing financial interests exist.
L Legault – No competing financial interests exist.
L Thabane – No competing financial interests exist.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
References
Publication types
MeSH terms
Grants and funding
LinkOut - more resources
Full Text Sources
Other Literature Sources
Medical
Molecular Biology Databases
