Pilot study to establish a prospective neonatal cohort: Study of Preterm Infants and Neurodevelopmental Genes (SPRING)

Wong, Hilary; Hopkins, Lucinda; O’Donovan, Michael; Thapar, Anita; Modi, Neena

doi:10.1136/bmjpo-2020-000648

Cited by 3 publications

(2 citation statements)

References 24 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The advent of opportunities to use ‘real-world’ health data provides a 21st century opportunity to improve the lifelong health of all preterm infants. 53 54…”

Section: Resultsmentioning

confidence: 99%

Adult outcomes after preterm birth

Prior

Modi

2020

Postgraduate Medical Journal

Self Cite

View full text Add to dashboard Cite

Extremely preterm birth reflects global disruption of the third trimester environment. Young adults born preterm have an adverse cardiovascular and metabolic health profile, together with molecular evidence of accelerated ageing and a reduced life expectancy. The underlying mechanism for these observations is unknown. This review summarises recent evidence of the lifetime effects of preterm birth and highlights the risks survivors face.

show abstract

“…The advent of opportunities to use ‘real-world’ health data provides a 21st century opportunity to improve the lifelong health of all preterm infants. 53 54…”

Section: Resultsmentioning

confidence: 99%

Adult outcomes after preterm birth

Prior

Modi

2020

Postgraduate Medical Journal

Self Cite

View full text Add to dashboard Cite

show abstract

“…The National Neonatal Research Database (NNRD) is a data asset containing detailed clinical information, a standard extract from the Electronic Patient Records of admissions to all NHS neonatal units in England, Wales, Scotland and the Isle of Man 1 2. The extract (the Neonatal Data Set, an approved NHS Information Standard) undergoes quality assurance prior to deposition in the NNRD.…”

Section: Introductionmentioning

confidence: 99%

Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset

Lammons

Moss

Bignell

et al. 2023

BMJ Health Care Inform

View full text Add to dashboard Cite

Objectives We involved public and professional stakeholders to assess a novel data interrogation tool, the Neonatal Health Intelligence Tool, for a National Data Asset, the National Neonatal Research Database. Methods We recruited parents, preterm adults, data managers, clinicians, network managers and researchers (trialists and epidemiologists) for consultations demonstrating a prototype tool and semi-structured discussion. A thematic analysis of consultations is reported by stakeholder group. Results We held nine on-line consultations (March–December 2021), with 24 stakeholders: parents (n=8), preterm adults (n=2), data managers (n=3), clinicians (n=3), network managers (n=2), triallists (n=3) and epidemiologists (n=3). We identified four themes from parents/preterm adults: struggling to consume information, Dads and data, bring data to life and yearning for predictions; five themes from data managers/clinicians/network managers: benchmarking, clinical outcomes, transfers and activity, the impact of socioeconomic background and ethnicity, and timeliness of updates and widening availability; and one theme from researchers: interrogating the data. Discussion Other patient and public involvement (PPI) studies have reported that data tools generate concerns; our stakeholders had none. They were unanimously supportive and enthusiastic, citing visualisation as the tool’s greatest strength. Stakeholders had no criticisms; instead, they recognised the tool’s potential and wanted more features. Parents saw the tool as an opportunity to inform themselves without burdening clinicians, while clinicians welcomed an aid to explaining potential outcomes to parents. Conclusion All stakeholder groups recognised the need for the tool, praising its content and format. PPI consultations with all key groups, and their synthesis, illustrated desire for additional uses from it.

show abstract

Recruitment and retention strategies to promote research engagement among caregivers and their children: A scoping review

Corr,

Jusufagic,

Basting

et al. 2024

J. Clin. Trans. Sci.

View full text Add to dashboard Cite

Long-term health and developmental impact after in utero opioid and other substance exposures is unclear. There is an urgent need for well-designed, prospective, long-term observational studies. The HEALthy Brain and Child Development Study aims to address this need. It will require optimizing recruitment and retention of caregivers and young children in long-term research. Therefore, a scoping review of original research articles, indexed in the PubMed database and published in English between January 1, 2010, and November 23, 2023, was conducted on recruitment and retention strategies of caregiver–child (≤6 years old) dyads in observational, cohort studies. Among 2,902 titles/abstracts reviewed, 37 articles were found eligible. Of those, 29 (78%) addressed recruitment, and 18 (49%) addressed retention. Thirty-four (92%) articles focused on strategies for facilitating recruitment and/or retention, while 18 (49%) described potentially harmful approaches. Recruitment and retention facilitators included face-to-face and regular contact, establishing a relationship with study personnel, use of technology and social platforms, minimizing inconveniences, and promoting incentives. This review demonstrates that numerous factors can affect engagement of caregivers and their children in long-term cohort studies. Better understanding of these factors can inform researchers about optimal approaches to recruitment and retention of caregiver–child dyads in longitudinal research.

show abstract

Pilot study to establish a prospective neonatal cohort: Study of Preterm Infants and Neurodevelopmental Genes (SPRING)

Cited by 3 publications

References 24 publications

Adult outcomes after preterm birth

Adult outcomes after preterm birth

Involving multiple stakeholders in assessing and reviewing a novel data visualisation tool for a national neonatal data asset

Recruitment and retention strategies to promote research engagement among caregivers and their children: A scoping review

Contact Info

Product

Resources

About