Article Text
Abstract
Introduction Around 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.
Methods This 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 dissemination G.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.
- paediatric neurology
- community child health
- developmental neurology & neurodisability
- preventive medicine
- public health
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Footnotes
MT, SV and CE contributed equally.
Deceased Dedicated to the late Swami Varishthananda, Ramakrishna Mission Home of Service, Varanasi,India
Contributors MT conceptualised G.A.N.E.S.H. and conceived the research questions; he is principle investigator and secured funding for the project; he prepared the study protocol with feedback from all collaborators; he provides second opinions for GMA and supervises and provides neurological interventions; he performs HINE and trained the physiotherapists in the same; he drafted the manuscript and approved the final manuscript as submitted. SV conceptualised G.A.N.E.S.H. and conceived the research questions; he is principle investigator and secured funding for the project; he prepared the study protocol with feedback from all collaborators; he supervised and provided paediatric interventions applied in G.A.N.E.S.H., he provided critical review of the first manuscript and the first revision. CE conceptualised G.A.N.E.S.H. and conceived the research questions; she is principle investigator and secured funding for the project; she prepared the study protocol with feedback from all collaborators; she developed the data base for the project; she trained all staff members in GMA, supervises GMA and provides third opinions. She drafted the manuscript, its revisions and approved the final manuscript as submitted. NT supervises the data collection under the guidance of investigators; he developed the data base for the project; he supervises and provides physiotherapeutic interventions; he performs HINE and approved the final manuscript as submitted. AnS supervises the data collection under the guidance of investigators; she developed the data base for the project; she supervises and provides health education including antenatal care; she performs GMA, provided critical review of the manuscript and approved the final manuscript as submitted. SKV developed the data base for the project and performs GMA and TDSC; he approved the final manuscript as submitted. KV supervises the data collection under the guidance of investigators; she performs GMA and provides health education including antenatal care; she approved the final manuscript as submitted. DZ advised on statistical design of the study, provided critical review of the first and second revisions and approved the final manuscript as submitted. AD provides physiotherapeutic intervention and health education; he performs HINE and TDSC; he approved the final manuscript as submitted. RG, SK, SR, KPS, SanjS, ShY and SuY perform GMA and provide health education; approved the final manuscript as submitted. NK provides physiotherapeutic intervention and health education, he performs HINE and TDSC, and approved the final manuscript as submitted. RN performs GMA and TDSC, and provides health education. He approved the final manuscript as submitted. KNS provided expert advice on early intervention in low-resource settings and supervises interventions applied in G.A.N.E.S.H.; she approved the final manuscript as submitted. AkS developed the data base for the project; she performs GMA and provides health education including antenatal care; she approved the final manuscript as submitted. DS provides physiotherapeutic intervention and health education; he performs HINE and TDSC. He approved the final manuscript as submitted. NaS provides hearing assessments and coordinates physiotherapeutic interventions. He approved the final manuscript as submitted. NeS provides physiotherapeutic intervention and health education; he performs HINE and TDSC, and approved the final manuscript as submitted. RiS performs GMA and provides health education; she approved the final manuscript as submitted. SPS performs GMA and provides health education; he approved the final manuscript as submitted. RaS he supervises and provides physiotherapeutic interventions and performs HINE; he approved the final manuscript as submitted. SandS performs GMA and TDSC; he provides special education and approved the final manuscript as submitted. PY performs GMA and TDSC and provides health education; approved the final manuscript as submitted. GY performs GMA, HINE and TDSC; he approved the final manuscript as submitted. PBM is co-PI; he secured funding for the project, assisted in conceptualisation and prepared the study protocol with feedback from all collaborators; he provided critical review of the manuscript and approved the final manuscript as submitted.
Funding This work is supported by Bill & Melinda Gates Foundation (opp1128871), the Austrian Science Fund FWF (P25241, TCS24, KLI811), the GM Trust (WHEP23-8-5-16), the Australian Cerebral Palsy Alliance (SEG00419), the Old Possum’s Practical Trust, the Medical Fund of Kiran Society and the Ramakrishna Mission.
Competing interests The GM Trust supports G.A.N.E.S.H. CE is a GM Trust tutor for GMA, and PBM is president of the GM Trust (honorary function), both of whom have contributed to G.A.N.E.S.H. on an honorary basis.
Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.