Advertisement

The Indian Journal of Pediatrics

, Volume 85, Issue 11, pp 948–951 | Cite as

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

  • A. Radha Rama Devi
  • Y. Ananthalakshmi
  • K. Srimannarayana Rao
Original Article
  • 61 Downloads

Abstract

Objective

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.

Methods

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.

Results

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.

Conclusions

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.

Keywords

Newborn screening Rural area Awareness Genetic counseling 

Notes

Acknowledgements

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.

Contributions

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

None.

Source of Funding

Funding for this work was received from Indian Council of Medical Research.

References

  1. 1.
    Padilla CD, Krotoski D, Therrell BL Jr. Newborn screening progress in developing countries--overcoming internal barriers. Semin Perinatol. 2010;34:145–55.CrossRefGoogle Scholar
  2. 2.
    Padilla CD. Towards universal newborn screening in developing countries: obstacles and the way forward. Ann Acad Med Singap. 2008;37:6–4.PubMedGoogle Scholar
  3. 3.
    Therrell BL. Challenges and opportunities in establishing and maintaining newborn screening systems. Southeast Asian J Trop Med Public Health. 2003;34:6–12.PubMedGoogle Scholar
  4. 4.
    Saadallah AA, Rashed MS. Newborn screening: experiences in the Middle East and North Africa. J Inherit Metab Dis. 2007;30:482–9.CrossRefGoogle Scholar

Copyright information

© Dr. K C Chaudhuri Foundation 2018

Authors and Affiliations

  • A. Radha Rama Devi
    • 1
  • Y. Ananthalakshmi
    • 2
  • K. Srimannarayana Rao
    • 2
  1. 1.Rainbow Children Hospital & Sandor Life SciencesHyderabadIndia
  2. 2.Konaseema Specialties HospitalAmalapuramIndia

Personalised recommendations