Study title

The data files summarise information on demographic features of each of the 100 household, sampled from across three sites (Delhi, Maharshtra, Rajasthan). These also contain anonymised description of sample details of the healthcare and policy practioners from four sites (3 above and Gujarat). The files also include consent and information sheets for both the data sets; topic guides for in depth interviews and vignettes used in the final phase of household interviews. Some of the files have Hindi translations inserted into the module since a majority of the research team (ISERDD, Delhi) are Hindi speakers as were our participants. In a limited number of situations, we had to use translators (as recorded into relevant file). All the modules and guides were translated into Hindi. These translated versions are not included here since you need a special font to be able to read these.Sickle cell and thalassaemia, forms of inherited blood disorders (IBD), classified by the WHO under 'prevention and management of inherited birth defects', have recently been defined as an emergent global health crisis. The pattern of recessive inheritance implies that babies who inherit two copies of a mutant gene (from both parents) will have a serious blood disorder, needing long term treatment and care; while carriers who inherit only one copy will not have the disease. A much higher incidence poses significant healthcare challenges in low and middle income countries, especially sub-Saharan Africa and India. India is estimated to have the largest number of carriers of IBD in the world, around 42-45 million; where approximately 22,500- 37,000 babies with IBD are born each year. A significant proportion are born in households with little or no access to healthcare, especially in the rural, poor, marginalised ethnic and 'tribal' communities. Despite cheap diagnostic tests and treatments, including curative stem cell transplants, available across public and private sectors, only...