INCLEN will estimate the prevalence and risk factors of neuro-developmental disabilities (NDD) among children in India. Due to lack of health and educational services in India, NDD are unrecognized and unmanaged, especially conditions like autistic spectrum disorders, thus contributing to the socioeconomic, psychological and educational deprivation of affected children. Goals of the proposed research include: (1) strengthening research capacity in India through collaboration with US expert scientists; and (2) development of policies, programs and services to children with NDD. Scientific evidence is essential for framing policies and programs on NDD issues within India. The major activities of this study include: development and validation of clinical and field tools for the identification and diagnosis of NDD by Indian and US experts and the development of research capacity strengthening skills to perform multi-centre collaborative studies. The proposed study is a cross-sectional survey with a population of children aged 2-9 years in urban and rural settings drawn from five different geographical zones of India. The sample size of 45,000 children has been calculated on the expectation of 4% prevalence of NDD. A cluster sampling method using population proportionate to size technique will be used. The primary screening will be conducted by a team of medical and social scientists specially trained to use the validated screening tool after taking informed consent. All those detected by the screening test as well as a sample of those who screen negative for NDD will be subjected to clinical validations by pediatricians using criteria developed by national and International experts. Strict quality assurance will be maintained at all stages of the study. The National Trust, Ministry of Social Justice and Empowerment, Government of India has expressed keen interest to utilize the results of the study for policy planning in India. According to scant data available, there is an assumption that developmental disabilities are much more prevalent in developing countries. Establishing baseline data will enhance efforts to prevent and achieve early interventions for this overlooked population. The experience gained in this study will be used to develop a R01 in order to generate similar data in other low and middle-income countries through. INCLEN is dedicated to improving the health of disadvantaged populations by promoting equitable healthcare based on the best evidence. ? ? ?
