ArticleBMC medical research methodology2014
Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort.
Article in BMC medical research methodology, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 3 of them syntheses that pooled it.
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Who cites it
16 citing papers in PubMed, 3 syntheses or guidelines pooled it, 24 citations in OpenAlex.
- Psychiatric research in the Northern Finland Birth Cohort 1986 - a systematic review.International journal of circumpolar health · 2019Pooled it
- Retention strategies in longitudinal cohort studies: a systematic review and meta-analysis.BMC medical research methodology · 2018Pooled it
- Longitudinal Intergenerational Birth Cohort Designs: A Systematic Review of Australian and New Zealand Studies.PloS one · 2016Pooled it
- Where to Next for Māori Health Research Review Processes? Insights Into the Indigenous Context: An Integrative Systematic Literature Review.Journal of the Royal Society of New Zealand · 2026Review
- Development of a structured tracking system to improve retention in a birth cohort in rural Ecuador.Global health action · 2025Article
- Participant engagement and involvement in longitudinal cohort studies: qualitative insights from a selection of pregnancy and birth, twin, and family-based population cohort studies.BMC medical research methodology · 2024Article
- Computerised emotional well-being and substance use questionnaires in young Indigenous and non-Indigenous Australian adults.SAGE open medicine · 2020Article
- Public and patient involvement in quantitative health research: A statistical perspective.Health expectations : an international journal of public participation in health care and health policy · 2018Article
- 'Telling our story... Creating our own history': caregivers' reasons for participating in an Australian longitudinal study of Indigenous children.International journal for equity in health · 2018Article
- The role of community health workers and local leaders in reducing attrition among participant in the AIDS indicator survey and HIV incidence in a national cohort study in Rwanda.BMC public health · 2018Article
- Article
- The Mother-Infant Study Cohort (MISC): Methodology, challenges, and baseline characteristics.PloS one · 2018Article
- Cohort Profile: The Australian Aboriginal Birth Cohort (ABC) study.International journal of epidemiology · 2017Article
- Managing Aboriginal and Torres Strait Islander Data for Public Health Research.Online journal of public health informatics · 2016Article
- Cohort Profile: Footprints in Time, the Australian Longitudinal Study of Indigenous Children.International journal of epidemiology · 2015Article
- Heart Failure in Minority Populations - Impediments to Optimal Treatment in Australian Aborigines.Current cardiology reviewsReview
Corrections and comments
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Authors and funding
3 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundLongitudinal prospective birth cohort studies are pivotal to identifying fundamental causes and determinants of disease and health over the life course. There is limited information about the challenges, retention, and collection strategies in the study of Indigenous populations. The aim is to describe the follow-up rates of an Australian Aboriginal Birth Cohort study and how they were achieved.
methodsParticipants were 686 babies enrolled between January 1987 and March 1990, born to a mother recorded in the Delivery Suite Register of the Royal Darwin Hospital (RDH) as a self-identified Aboriginal. The majority of the participants (70%) resided in Northern Territory within rural, remote and very remote Aboriginal communities that maintain traditional connections to their land and culture. The Aboriginal communities are within a sparsely populated (0.2 people/ km2) area of approximately 900,000 km² (347 sq miles), with poor communication and transport infrastructures. Follow-ups collecting biomedical and lifestyle data directly from participants in over 40 locations were conducted at 11.4 years (Wave-2) and 18.2 years (Wave-3), with Wave-4 follow-up currently underway.
resultsFollow-ups at 11 and 18 years of age successfully examined 86% and 72% of living participants respectively. Strategies addressing logistic, cultural and ethical challenges are documented.
conclusionsSatisfactory follow-up rates of a prospective longitudinal Indigenous birth cohort with traditional characteristics are possible while maintaining scientific rigor in a challenging setting. Approaches included flexibility, respect, and transparent communication along with the adoption of culturally sensitive behaviours. This work should inform and assist researchers undertaking or planning similar studies in Indigenous and developing populations.
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