Hexasomy of the 15q11q13 region: a detailed report and review of the literature.

Hexasomy of the Prader-Willi/Angelman Syndrome Critical Region (PWASCR; chromosome 15q11-q13) is very rare with only 13 patients being described to date. The region is known for its high susceptibility to genomic rearrangements, and extra copies within the region have been shown to be associated with distinct but variable clinical features of intellectual disability, epilepsy, global developmental delay amongst others. We present a 10-year-old girl with moderate to severe intellectual disability, cerebral palsy, seizures, autistic features and challenging behaviours.

The next 1000 days: building on early investments for the health and development of young children.

Following the first 1000 days of life that span from conception to two years of age, the next 1000 days of a child's life from 2-5 years of age offer a window of opportunity to promote nurturing and caring environments, establish healthy behaviours, and build on early gains to sustain or improve trajectories of healthy development. This Series paper, the first of a two-paper Series on early childhood development and the next 1000 days, focuses on the transition to the next 1000 days of the life course, describes why this developmental period matters, identifies the environments of care, risks, and protective factors that shape children's development, estimates the number of children who receive adequate nurturing care, and examines whether current interventions are meeting children's needs. Paper 2 focuses on the cost of inaction and the implications of not investing in the next 1000 days.

Supporting caregivers of children living with disability in a humanitarian context: realist-informed evaluation of the ' programme in Afghanistan.

Introduction: To ensure that humanitarian action is disability-inclusive, evidence is needed to understand how different strategies to support children living with disabilities and their families can work in these settings. Evidence from other contexts suggests support groups can improve caregiver quality of life (QOL). This study reports an evaluation of the ' programme a participatory educational support group programme for caregivers of children living with disability in Kabul province, Afghanistan.

Every Newborn-Reach Up Early Education Intervention for All Children (EN-REACH)- a parent group intervention for school readiness in Bangladesh, Nepal, and Tanzania: study protocol for a cluster randomized controlled trial.

Background: Vulnerable children, including those with neuro-developmental delays and disabilities, often face barriers in accessing early primary education, thus hindering progress toward Sustainable Development Goal 4.2. Evidence-based interventions are essential to enhancing inclusivity and establishing sustainable implementation strategies to address this challenge.

Interventions to promote development in the next 1000 days: A mapping review.

The next 1000 days - the period from 2 to 5 years of age - has been highlighted as a key developmental stage in the life-course. A mapping review was conducted to categorize existing literature on interventions in the next 1000 days that promote key developmental outcomes, including publications between 1990 and July 2020. A total of 805 intervention studies were included for data extraction in the review.

Multicountry review: developmental surveillance, assessment and care by outpatient paediatricians.

Background: Care of young children with neurodevelopmental disorders (NDD) is a major component of paediatric outpatient practice. However, cross-country practice reviews to date have been limited, and available data demonstrate missed opportunities for early identification, particularly in vulnerable population subgroups.

Methods: Multicountry review of national paediatric body guidance related to developmental surveillance, early identification and early childhood intervention together with review of outpatient paediatrician practices for developmental assessment of children aged 0-5 years with/at risk of NDDs.

Emotional and Behavioral Outcomes in Childhood for Survivors of Invasive Group B Streptococcus Disease in Infancy: Findings From 5 Low- and Middle-Income Countries.

Background: Survivors of invasive group B Streptococcus (iGBS) disease, notably meningitis, are at increased risk of neurodevelopmental impairment. However, the limited studies to date have a median follow-up to 18 months and have mainly focused on moderate or severe neurodevelopmental impairment, with no previous studies on emotional-behavioral problems among iGBS survivors.

Methods: In this multicountry, matched cohort study, we included children aged 18 months to 17 years with infant iGBS sepsis and meningitis from health demographic surveillance systems, or hospital records in Argentina, India, Kenya, Mozambique, and South Africa.

Congenital Zika Syndrome-Assessing the Need for a Family Support Programme in Brazil.

The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study.

Human resources and curricula content for early child development implementation: multicountry mixed methods evaluation.

Objective: The WHO recommends responsive caregiving and early learning (RCEL) interventions to improve early child development (ECD), and to achieve the Sustainable Development Goals' vision of a world where all children thrive. Implementation of RCEL programmes in low and middle-income countries (LMIC) requires evidence to inform decisions about human resources and curricula content. We aimed to describe human resources and curricula content for implementation of RCEL projects across diverse LMICs, using data from the Grand Challenges Canada Saving Brains ECD portfolio.

Strengthening Health Systems to Support Children with Neurodevelopmental Disabilities in Fiji-A Commentary.

Supporting children with neurodevelopmental disabilities (NDDs) is recognized as an increasing priority in Fiji, a middle-income Pacific Island country. Our objective was to describe our approach to developing a model of care and strengthening local leadership in developmental paediatrics in Fiji to ensure high-quality identification, assessment and management of children with NDDs. Paediatric staff at Colonial War Memorial (CWM) Hospital in Suva have worked in partnership with Australian paediatricians to develop the model of care.

Requirements for improving health and well-being of children with Prader-Willi syndrome and their families.

Prader-Willi syndrome (PWS) is a rare genetic condition with multi-system involvement. The literature was reviewed to describe neurodevelopment and the behavioural phenotype, endocrine and metabolic disorders and respiratory and sleep functioning. Implications for child and family quality of life were explored.

Accountability for funds for Nurturing Care: what can we measure?

Background: Understanding donor, government and out-of-pocket funding for early child development (ECD) is important for tracking progress. We aimed to estimate a baseline for the WHO, UNICEF and World Bank Nurturing Care Framework (NCF) with a special focus on childhood disability.

Methods: To estimate development assistance spending, the Organisation for Economic Cooperation and Development's Creditor Reporting System (OECD-CRS) database was searched for 2007-2016, using key words derived from domains of the NCF (good health, nutrition and growth, responsive caregiving, security and safety, and early learning), plus disability.

Rating early child development outcome measurement tools for routine health programme use.

Background: Identification of children at risk of developmental delay and/or impairment requires valid measurement of early child development (ECD). We systematically assess ECD measurement tools for accuracy and feasibility for use in routine services in low-income and middle-income countries (LMIC).

Methods: Building on World Bank and peer-reviewed literature reviews, we identified available ECD measurement tools for children aged 0-3 years used in ≥1 LMIC and matrixed these according to (child age) and (ECD domains) they measure at population or individual level.

Counting outcomes, coverage and quality for early child development programmes.

Improved measurement in early child development (ECD) is a strategic focus of the WHO, UNICEF and World Bank Nurturing Care Framework. However, evidence-based approaches to monitoring and evaluation (M&E) of ECD projects in low-income and middle-income countries (LMIC) are lacking. The Grand Challenges Canada®-funded Saving Brains® ECD portfolio provides a unique opportunity to explore approaches to M&E of ECD programmes across diverse settings.

Contextual design choices and partnerships for scaling early child development programmes.

Translating the Nurturing Care Framework and unprecedented global policy support for early child development (ECD) into action requires evidence-informed guidance about to implement ECD programmes at national and regional scale. We completed a literature review and participatory mixed-method evaluation of projects in Saving Brains®, Grand Challenges Canada® funded ECD portfolio across 23 low- and middle-income countries (LMIC). Using an adapted programme cycle, findings from evaluation related to partnerships and leadership, situational analyses, and design for scaling ECD were considered.

Neurodevelopmental outcomes for high-risk neonates in a low-resource setting.

Worldwide, most neonates who survive prematurity and serious illness reside in low-resource settings where developmental outcome data and follow-up care are limited. This study aimed to assess in Fiji, a low-resource Pacific setting, prevalence and risk factors for moderate to severe neurodevelopmental impairment (NDI) in early childhood among high-risk neonates compared with controls. Retrospective cohort study comparing long-term outcomes for high-risk neonatal intensive care unit patients (n=149) compared with matched term, normal birth weight neonates (n=147) discharged from Colonial War Memorial Hospital between November 2008 and April 2010.

Reducing newborn mortality in the Asia-Pacific region: Quality hospital services and community-based care.

Improving newborn health and survival is an essential part of progression toward Millennium Development Goal 4 in the World Health Organization Western Pacific and South East Asian regions. Both community and facility-based services are required. Strategies to improve the quality of care provided for newborns in health clinics and district- and referral-level hospitals have been relatively neglected in most countries in the region and in the published literature.