Research focused on children with intellectual disabilities has been of increasing interest over the last two decades. However, a considerable lag in the amount of research that is representative and generalizable to this population in comparison to neurotypical children remains, largely attributed to issues with participant engagement and recruitment. Challenges and barriers associated with engaging and recruiting this population include lack of research to provide a sound foundation of knowledge, ethical considerations, parental attitudes, family commitments, and organizational gatekeeping. Researchers can engage children and their families using participatory research methods, honouring the child's right to assent, and collaborating with parents. Recruitment strategies include partnering with organizations, working with parent and patient partners, and using remote methods. Employing evidence-informed engagement and recruitment strategies may provide substantial social and scientific value to the research field by ensuring that this underrepresented population benefits equitably from research findings.
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http://dx.doi.org/10.1177/17446295241255178 | DOI Listing |
Zhonghua Yi Xue Yi Chuan Xue Za Zhi
January 2025
Department of Clinical Laboratory, Children's Hospital Affiliated to Zhengzhou University, Zhengzhou Key Laboratory of Children's Infection and Immunity, Zhengzhou, Henan 450018, China.
Objective: To explore the clinical features of a child with Lamb-Shaffer syndrome (LAMSHF) due to a variant of SOX5 gene.
Methods: A child who was admitted to Children's Hospital Affiliated to Zhengzhou University in July 2022 was selected as the study subject. Clinical data of the child was collected.
Child Care Health Dev
January 2025
Shirley Ryan AbilityLab, Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA.
Background: Those with neurological disorders like cerebral palsy (CP) may experience an altered impact of social determinates of health on child functioning and well-being. We investigated the relationship between relative social advantage and medical and functional outcomes in a large cohort of children, adolescents and young adults with CP (n = 1269, aged 2-84 years).
Methods: We extracted data from the Cerebral Palsy Research Registry and dichotomized a range of independent factors (income, ethnicity and race) into advantaged and disadvantaged/vulnerable and a range of medical and functional outcomes (gross motor, manual ability, behaviour, breathing, nutritional intake, hearing, seizures, language and vision) and computed odds ratios using logistic regression.
BJOG
January 2025
State Key Laboratory of Reproductive Medicine and Offspring Health, Clinical Center of Reproductive Medicine, The First Affiliated Hospital of Nanjing Medical University, Nanjing, China.
Objective: To assess the comprehensive health status of school-age children conceived through assisted reproductive technology (ART) compared to that of those conceived naturally.
Design: A prospective cohort study of children conceived through ART.
Setting: First Affiliated Hospital of Nanjing Medical University, China.
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