The Ministry of Science and Technology is targeting to screen 10,000 pregnant women and 5000 new born babies per year for inherited genetic diseases in seven aspirational districts. These includeMewat in Haryana, Yadgir in Karnataka, Haridwar in Uttarkhand, Washim and Nandurbar in Maharashtra, Ranchi/Bokaro in Jharkhand and Shrawasti in Uttar Pradesh.

A press release by the Ministry stated congenital malformations and genetic disorders are the third most common cause of mortality among newborns in India’s urban areas.

High prevalence of genetic disorders

With a very large population and high birth rate, and consanguineous marriage favoured in many communities, prevalence of genetic disorders is high in India.

According to the guidelines of the Ministry of Health and Family Welfare, the following groups of women are at the risk of delivering babies with inherited genetic disorders:

1. Pregnant women above the age of 35 years

2. Expectant mothers with gestational diabetes

3. Women who have consumed medication for epilepsy during pregnancy

4. Women who have a family history of Duchenne Muscular Dystrophy, Thallasemia or Haemophilia

UMMID initiative

Taking into account that congenital and hereditary genetic diseases are becoming a health burden in India, and realising the need for adequate and effective genetic testing as well as counselling services, the Department of Biotechnology has started Unique Methods of Management and treatment of Inherited Disorders (UMMID) initiative.

NIDAN Kendras

Renu Swarup, Secretary, Department of Biotechnology said that National Inherited Diseases Administration (NIDAN) Kendras will be established to provide counselling, prenatal testing and diagnosis, management, and multidisciplinary care in government hospitals wherein the influx of patients is more.

The NIDAN kendras will be established in Lady Hardinge Medical College in Delhi, Nizam’s Institute of Medical Sciences in Hyderabad, All India Institute of Medical Sciences (AIIMS) in Jodhpur, Army Hospital Research Camp in Delhi and Nil Ratan Sirgar Medical College in Kolkata.

The initiative will also help in producing skilled clinicians in Human Genetics. Training Centres at Madras Medical Mission in Chennai, SGPGIMS in Lucknow, CDFD in Hyderabad, AIIMS and MAMC in New Delhi, NIIH in Mumbai and CMC Vellore have been chosen to mentor and to provide training in Biochemical Genetics, Cytogenetics, Molecular Genetics, and Clinical Genetics to the clinicians from government hospitals, the press release stated.

The department is planning to expand the program and establish more NIDAN Kendras in other parts of the country, train more clinicians in clinical genetics and cover more aspirational districts in the next phase, the press release said.

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