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Feasibility Study of an Outreach Program of Newborn Screening in Uttar Pradesh

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Abstract

Objectives

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.

Methods

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.

Results

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.

Conclusions

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

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Acknowledgments

The authors thank Department of Biotechnology, New Delhi for the funding support. They wish to thank following collaborrators: Drs. AbhayVerma, Amita Joshi, Anil KumarVerma, Chitra, Cynthia M, Manu Bhatnagar, Meenu Sagar, Nilamber, Pradeep Tandon, Rajinder Chawla, Ramakant, Rita Raman, Sandhya Pradhan, Sarita Saxena, Savita Bhat, Sr Immaculate, SK Singh, SK Tandon and Vijayalakshmi of the following hospitals- District Women’s Hospital, Barabanki; Ram Manohar Lohia Hospital; Veerangana Avanti Bai Hospital and Veerangana Jhalkari Bai Hospital, Lucknow; and Bishop Conrad Memorial Hospital, Khairabad, Uttar Pradesh. They also thank Dr Deepa Kapoor, General Hospital of SGPGIMS, Lucknow. They wish to thank following field workers, nurses and data entry operators: Abhishek Verma, Akhilesh Yadav, Anil Yadav, AnkurSaxena, Arjun Singh, Kamla Singh, Manavendraji Tiwari, Pallavi Tiwari, Richa Pandey, Shiny Davis, Shivam Tiwari and Vibhuti Gupta. For technical help they thank Pramod Kumar Dubey, Divya Singh and PK Awasthi.

Contributions

SRP, VB: Planned the project; SRP, VB, PD, MA, KJ, VG: Established laboratory facility and quality control; SRP, MA: Prepared the manuscript; VD, AP, MK, VB: Organised program in peripheral hospitals and gave inputs in manuscript preparation. SRP will act as guarantor for this paper.

Conflict of Interest

None.

Source of Funding

Department of Biotechnology provided funds for this project.

Author information

Authors and Affiliations

  1. Department of Medical Genetics, Sanjay Gandhi Post Graduate Institute of Medical Sciencces, Lucknow, Uttar Pradesh, 226014, India

    Meenal Agarwal & Shubha R. Phadke

  2. Department of Endocrinology, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Uttar Pradesh, India

    Kriti Joshi, Vijayalakshmi Bhatia, Vignesh Gopalakrishnan & Preeti Dabadghao

  3. Department of Obstetrics and Gynecology, King George’s Medical University, Lucknow, Uttar Pradesh, India

    Vinita Das & Amita Pandey

  4. Department of Pediatrics, King George’s Medical University, Lucknow, Uttar Pradesh, India

    Mala Kumar

Authors
  1. Meenal Agarwal
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  2. Kriti Joshi
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  3. Vijayalakshmi Bhatia
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  4. Vignesh Gopalakrishnan
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  5. Preeti Dabadghao
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  6. Vinita Das
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  7. Amita Pandey
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  8. Mala Kumar
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  9. Shubha R. Phadke
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Corresponding author

Correspondence to Shubha R. Phadke.

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Agarwal, M., Joshi, K., Bhatia, V. et al. Feasibility Study of an Outreach Program of Newborn Screening in Uttar Pradesh. Indian J Pediatr 82, 427–432 (2015). https://doi.org/10.1007/s12098-014-1557-6

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  • DOI: https://doi.org/10.1007/s12098-014-1557-6

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