Challenges and Opportunities in Establishing and Maintaining Newborn Screening in a Rural Area of Andhra Pradesh – Task Force Study by Indian Council of Medical Research
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The primary objective was to evaluate the feasibility of setting up newborn screening in rural areas in India. Secondary objective was to enhance the knowledge and awareness towards early detection of diseases by newborn screening, management of the affected baby and to impart genetic counseling.
Awareness programs were conducted at different mandals in the district for the medical practioners during the preparatory phase of the Task Force Project. Educative lectures and clinical meetings regarding the importance and relevance of newborn screening were held every 3 months initially and half yearly later. Families were counselled during antenatal check-ups.
Good co-operation was obtained from medical doctors and their willingness to participate in sample collection from the hospitals. Families accepted screening after an initial period of resistance. The fact that screening of this kind will help their babies made a positive impact. Many families started promoting newborn screening to their friends and relations. Confirmation of diagnosis, treatment, and follow-up were satisfactory with almost negligible number of cases lost to follow-up.
With proper planning and commitment on the part of health authorities, it is possible to implement newborn screening in rural areas in India as well.
KeywordsNewborn screening Rural area Awareness Genetic counseling
This study was supported by Indian Council of Medical Research (ICMR) under the National Task Force (NTF) on Inborn Metabolic Disorders- Newborn Screening for Congenital Hypothyroidism (CH) and Congenital Adrenal Hyperplasia (CAH)- a multicentric study.
KSR: Drafted the document; YA: Participated in awareness program; ARRD: Reviewed the document, also actively participate in the program and will act as guarantor for the paper.
Compliance with Ethical Standards
Conflict of Interest
Source of Funding
Funding for this work was received from Indian Council of Medical Research.