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Challenges in conducting multicentre, multidisciplinary, longitudinal studies in children with chronic conditions

Hillary L Broder1, Canice E Crerand2, Ryan R Ruff3

  • 1New York University College of Dentistry, New York, NY, USA.

Community Dentistry and Oral Epidemiology
|February 22, 2017
PubMed

Insights

Longitudinal research on youth with cleft lip and palate presents challenges. Effective communication and flexibility were key to overcoming issues in this 6-year study.

Area of Science:

  • Cleft lip and palate research
  • Longitudinal study design
  • Chronic condition management

Background:

  • Longitudinal, multicentre research in chronic conditions is complex.
  • Investigative teams face foreseen and unforeseen challenges.
  • Adaptability is crucial for successful research execution.

Purpose of the Study:

  • Identify challenges in a longitudinal study of youth with cleft lip and palate (CLP).
  • Document solutions implemented to address these challenges.
  • Inform future longitudinal research on chronic conditions.

Main Methods:

  • Observational, longitudinal study of youth with CLP and caregivers.
  • 6-year duration (2009-2015) across six US multidisciplinary cleft treatment centers.
  • Examined oral health-related quality of life and clinical observations over time.

Main Results:

  • Key challenges included communication, protocol adherence, data quality, site variability, participant retention, and personnel turnover.
  • Balancing clinical and research tasks was also a significant issue.
  • Ongoing communication, commitment, and flexibility were vital for success.

Conclusions:

  • Longitudinal studies of children with CLP and their caregivers present unique challenges.
  • Solutions identified can guide future research design for chronic conditions.
  • Flexibility and strong communication are essential for navigating research complexities.
Abstract

Keywords:
clinical researchcraniofacial anomaliesquality of lifestudy design

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