Feasibility study of an outreach program of newborn screening in Uttar Pradesh

To create awareness about newborn screening (NBS) in underprivileged population and establish the model of NBS as an outreach program in peripheral hospitals in and around Lucknow.

During this project, social workers were trained in taking informed consent, demographic details of newborns, heel prick samples and transporting the filter papers to a central laboratory. These social workers were posted in seven hospitals, in and around Lucknow, catering to families with low socioeconomic strata. Assays were performed in a single laboratory and results were conveyed back to the social workers and the hospitals.

A total of 13,426 newborns were screened for the three conditions namely congenital hypothyroidism (CH), biotinidase deficiency and galactosemia. Over all coverage rate was 73.5 % and average time of reporting of results was 8.8 + 2.4 days. More than 85 % (86.7 %) families with positive screening test could be contacted back and out of them, 83.6 % babies could be sampled for confirmatory tests. Eleven babies were diagnosed to have CH. The study has shown positive and enthusiastic responses of the lay persons. Questionnaire based survey among lay persons showed that almost 100 % individuals understood the advantages and method of NBS.

This project has been successful in establishing a model of NBS as an outreach program in and around a district.