Enhancing early detection of neurological and developmental disorders and provision of intervention in low-resource settings in Uttar Pradesh, India: study protocol of the G.A.N.E.S.H. programme

Abstract

IntroductionAround 9% of India’s children under six are diagnosed with neurodevelopmental disorders. Low-resource, rural communities often lack programmes for early identification and intervention. The Prechtl General Movement Assessment (GMA) is regarded as the best clinical tool to predict cerebral palsy in infants <5 months. In addition, children with developmental delay, intellectual disabilities, late detected genetic disorders or autism spectrum disorder show abnormal general movements (GMs) during infancy. General Movement Assessment in Neonates for Early Identification and Intervention, Social Support and Health Awareness (G.A.N.E.S.H.) aims to (1) provide evidence as to whether community health workers can support the identification of infants at high-risk for neurological and developmental disorders and disabilities, (2) monitor further development in those infants and (3) initiate early and targeted intervention procedures.MethodsThis 3-year observational cohort study will comprise at least 2000 infants born across four districts of Uttar Pradesh, India. Community health workers, certified for GMA, video record and assess the infants’ GMs twice, that is, within 2 months after birth and at 3–5 months. In case of abnormal GMs and/or reduced MOSs, infants are further examined by a paediatrician and a neurologist. If necessary, early intervention strategies (treatment as usual) are introduced. After paediatric and neurodevelopmental assessments at 12–24 months, outcomes are categorised as normal or neurological/developmental disorders. Research objective (1): to relate the GMA to the outcome at 12–24 months. Research objective (2): to investigate the impact of predefined exposures. Research objective (3): to evaluate the interscorer agreement of GMA.Ethics and disseminationG.A.N.E.S.H. received ethics approval from the Indian Government Chief Medical Officers of Varanasi and Mirzapur and from the Ramakrishna Mission Home of Service in Varanasi. GMA is a worldwide used diagnostic tool, approved by the Ethics Committee of the Medical University of Graz, Austria (27-388 ex 14/15). Apart from peer-reviewed publications, we are planning to deploy G.A.N.E.S.H. in other vulnerable settings.

Reliability of the Motor Optimality Score‐Revised: A study of infants at elevated likelihood for adverse neurological outcomes

“…(2) 97 infants from an on‐going project of the General Movement Assessment in Neonates for Early Identification and Intervention, Social Support and Health Awareness (G.A.N.E.S.H.) project 27 . The G.A.N.E.S.H.…”

“…project, GMA‐certified community health workers, video recorded all participating infants at 3–5 months of age. Infants were recorded using smartphones in the parents' home, in health camps or in primary health centers 27 . Assessment of the MOS‐R were performed independently during the period of January 2020 to December 2021 by two experienced assessors (CE and MT).…”

From guidelines to practice: A retrospective clinical cohort study investigating implementation of the early detection guidelines for cerebral palsy in a state-wide early intervention service

“…Network development commenced during this study; clinicians from around the state were invited to early detection training, supported through the GMA CoP, and clinical outreach services were initiated. Successful implementation of population screening of infants at fidgety age using GMA,48 facilitated by machine learning algorithms to automate scoring49 is under investigation50 to provide an accessible, sustainable method of identifying all infants at risk early 51. In addition to accurate identification of risk, success will require a system for secure transfer of results, clinical validation, good communication with parents and clear pathways to fast track referral to specialised early intervention services.…”

General Movement Assessment in Prediction of Neurodevelopmental Disability and Cerebral Palsy

“…However, such a procedure may not be feasible in the absence of cameras and smartphones. To counter this deficiency, community health workers or ASHAs can be trained to film the movements [10], which can be scored distantly by certified assessors with specific high-quality training. Despite all these technicalities, GMA is much easier to be carried out than most neurodevelopmental assessments.…”