Unique Methods of Management and treatment of Inherited Disorders

Congenital and hereditary genetic diseases are becoming a significant health burden in India, and hence there is a need for adequate and effective genetic testing and counselling services. In India’s urban areas, congenital malformations and genetic disorders are the third most common cause of mortality in newborns. With a very large population and high birth rate, and consanguineous marriage favored in many communities, prevalence of genetic disorders is high in India. 

UMMID is a Department of Biotechnology (DBT), Ministry of Science and Technology initiative to create awareness about genetic disorders amongst clinicians and establish molecular diagnostics in hospitals for the benefit of patients in India. The whole initiative is designed on the concept of ‘Prevention is better than Cure’.

The plan of the UMMID initiative is to link the well-established centres of Medical Genetics in India to upcoming centres and to establish clinical genetics facilities in district hospitals. This will improve patient care services for genetic disorders and impart latest medical genetics education to medical students to prepare them for the era of molecular medicine.

Training and diagnostic services under UMMID

UMMID plans to work at three levels of medical care which will work in close collaboration with a close link between training and establishment of diagnostic services. The three components of UMMID are given below.

• Fellowship in Genetic Diagnostics : Hands-on training for six months will be provided to doctors working in government hospitals by eight departments with state-of-the-art DNA-based diagnostic services for genetic disorders. Each centre will train 4 fellows per year thus providing 96 trained doctors in genetic diagnostics during the period of 3  years.
• NIDAN Kendras (Diagnostic Centres) : Hospitals with interested doctors, committed administrators and basic infrastructure have been selected and have been funded to establish genetic laboratories. The financial support and twinning with established Medical Genetics centres will help them to develop state-of-the-art facilities in molecular diagnostics.
• Prevention of genetic Disorders in Aspirational Districts : Each of the 7 centres providing genetic training have adopted one aspirational district and will establish a program for prevention of genetic disorders including beta thalassemia and newborn screening for treratable disorders. This will be a prototype of an outreach program which will take latest genetic diagnostics to the population and lead the way to incorporate genetic services in maternal and child care. This will provide onsite training to the doctors in these district hospitals in addition to creating awareness about genetic disorders amongst the general population.

List of Training Centres

• Department of Medical Genetics, Sanjay Gandhi Postgraduate Institute of Medical Sciences (SGPGIMS), Raibarelly Road, Lucknow, Uttar Pradesh
• Division of Genetics, Department of Pediatrics, All India Institute of Medical Sciences (AIIMS),  New Delhi
• Genetics Unit, Department of Pediatrics, Maulana Azad Medical College (MAMC), New Delhi
• Department of Clinical Genetics, Christian Medical College (CMC), Vellore, Tamil Nadu
• Centre for Genetic Studies and Research, The Madras Medical Mission, Chennai, Tamil Nadu
• Diagnostics Division, Centre for DNA Fingerprinting and Diagnostics (CDFD), Hyderabad, Telangana
• Department of Haematology, Christian Medical College (CMC), Vellore, Tamil Nadu
• ICMR‐National Institute of Immunohaematology (NIIH), KEM Hospital, Parel, Mumbai

List of NIDAN Kendras

• Lady Hardinge Medical College (LHMC), Delhi
• Nizam’s Institute of Medical Sciences (NIMS), Hyderabad, Telangana
• All India Institute of Medical Sciences (AIIMS), Jodhpur
• Army Hospital Research & Referral, Delhi
• Nil Ratan Sircar (NRS) Medical College and Hospital, Kolkata

List of aspirational districts covered under the programme

Expected outcomes of UMMID

• Contribute to patient care services for genetic disorders which account for 80% of rare disorders, by developing trained manpower in the cutting-edge area of genomic technologies.
• Establish genetic diagnostic centres in different parts of the country which will not only provide patient care services but improve the component of medical genetics training in medical education & equip medical doctors of the twenty-first century for the era of molecular medicine.
• Create awareness about genetic disorders amongst clinicians & laypersons, so that the patients & families get appropriate diagnosis, management & preventive services through government (Beneficiaries - 70000 pregnant women & 35000 newborn babies per year)
• UMMID will spread the reach of diagnostic facilities for rare genetic disorders, pharmacogenetics, prenatal diagnosis & population - based screening for prevention.
• Establishment of genomic techniques will contribute to research into genetic aspects of rare & common genetic disorders.

Source: Department of Biotechnology