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

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 cerebra...

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Published in:	BMJ open Vol. 10; no. 11; p. e037335
Main Authors:	Toldo, Moreno, Varishthananda, Swami, Einspieler, Christa, Tripathi, Neeraj, Singh, Anshu, Verma, Surendra K, Vishwakarma, Kanchan, Zhang, Dajie, Dwivedi, Agyeya, Gupta, Ritika, Karn, Sanjay, Kerketta, Nirmal, Narayan, Ram, Nikam Singh, Karuna, Rani, Sumitra, Singh, Akanksha, Singh, Divyanshu, Singh, Krishna Pratap, Singh, Navin, Singh, Neeraj, Singh, Rishi, Singh, Shyam P, Srivastava, Rakesh, Srivastava, Sandeep, Srivastava, Sanjeev, Yadav, Gopal, Yadav, Preeti, Yadav, Sheshnath, Yadav, Sujata, Marschik, Peter B
Format:	Journal Article
Language:	English
Published:	England BMJ Publishing Group LTD 03-11-2020 BMJ Publishing Group
Series:	Protocol
Subjects:	Austria Autism Spectrum Disorder - diagnosis Birth weight Births Cerebral Palsy Children & youth Childrens health Cohort Studies Families & family life Female Health education Humans Identification India Infant Infant, Newborn Intellectual disabilities Intervention Low income groups Medicin och hälsovetenskap Mortality Neurodevelopmental disorders Nutrition Pediatrics Population Pregnancy Prenatal care Public Health Rehabilitation Risk factors Sanitation Social exclusion Austria India paediatric neurology developmental neurology & neurodisability public health preventive medicine community child health
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Summary:	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.
Bibliography:	ObjectType-Article-1 SourceType-Scholarly Journals-1 ObjectType-Feature-2 content type line 23
ISSN:	2044-6055 2044-6055
DOI:	10.1136/bmjopen-2020-037335