UMMID(Unique Methods of Management and treatment of Inherited Disorders)

Context-: Department of Biotechnology

(MINISTRY OF SCIENCE AND TECHNOLOGY)

launched UMMID (Unique Methods of

Management and treatment of Inherited

Disorders) initiative and inaugurated NIDAN

(National Inherited Diseases Administration)

Kendras.

AIM-:(i) to establish NIDAN Kendras to provide

counselling, prenatal testing and diagnosis,

management, and multidisciplinary care in

Government Hospitals wherein the influx of

patients is more

(ii) to produce skilled clinicians in Human

Genetics.

संदर्भ-: जैवप्रौद्योगिकी गवभाि (गवज्ञान और

प्रौद्योगिकी मंत्रालय) ने UMMID (प्रबंधन और

अनुपस्थित गवकार के उपचार के अनूठे तरीके)

पहल का शुभारंभ गकया और NIDAN (नेशनल

इनहेररटेड गडसीज एडगमगनस्ट्र ेशन) कें डर ्स का

उद्घाटन गकया।

AIM-:

i. सरकारी अस्पतालों में परामशश, प्रसव पूवश

परीक्षण और गनदान, प्रबंधन और बहु-गवषयक

देखभाल प्रदान करने के गलए NIDAN

Kendras थिागपत करना, गजसमें रोगियों

की आमद अगधक है

ii. मानव जेनेगटक्स में कुशल गचगकत्सकों का

उत्पादन करने के गलए।

III. to undertake screening of pregnant

women and new born babies for inherited

genetic diseases in hospitals at

aspirational districts.

iii. आकांक्षी गजलों के अस्पतालों में गवरासत में गमली आनुवांगशक

बीमाररयों के गलए िभशवती मगहलाओं और नवजात गशशुओं की

जांच करना

Need of UMMID

Committee and their recommendation

Committee Recommendations

V.K. Paul Committee As about 80% of rare disease are genetic, the Committee recommended that it is essential to provicegenetic counselling and offer prenatal testing to the families with genetic disorder, as it will provide them an option of terminating the affected fetuses.

I.C Verma Sub-Committee There is a need for government to play a role in evolving a funding mechanism for treatment of rare diseases.

Deepak. K. Tempe Committee Keeping in mind treatment and the other formidable challenges as discussed above, appreciated from the perspective of public health principle of evidence-informed resource allocation for garnering optimal outcome for the resources allocated, makes it imperative that the same be done in a phased manner.

Dr. Renu Swarup, Secretary, DBT

also highlighted how UMMID is a

path-breakinginitiative in the

health-care sector. She said

“UMMID initiative is meeting the

hopes of large number of persons

with inherited diseases”.

Taking into account that

congenital and hereditary

genetic diseases are becoming a

significant health burden in India,

and realizing the need for

adequate and effective genetic

testing and counselling services

डॉ। रेणु स्वरूप, सगचव, डीबीटी ने यह

भी बताया गक स्वास्थ्य देखभाल के के्षत्र मेंUMMID एक पिप्रदशशक कैसे है।

उन्ोनें कहा गक UMMID पहल

गवरासत में गमली बीमाररयों के साि बडी

संख्या में लोिों की आशाओं को पूरा कर

रही है।

यह ध्यान में रखते हुए गक जन्मजात और

वंशानुित आनुवांगशक बीमाररयााँ भारत

में एक महत्वपूणश स्वास्थ्य बोझ बन रही

हैं, और पयाशप्त और प्रभावी आनुवंगशक

परीक्षण और परामशश सेवाओं कीआवश्यकता को साकार कर रही हैं।

DBT has started the UMMID

Initiative which is designed on

the concept of ‘Prevention is

better than Cure’. 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

DBT ने UMMID पहल शुरू की

है जो रोकिाम की अवधारणा पर

तैयार की िई है जो क्योर से बेहतर

है। इंगडयास शहरी के्षत्रों में,

जन्मजात गवकृगतयां और

आनुवंगशक गवकार नवजात

गशशुओं में मृतु्य का तीसरा सबसे

आम कारण है।

बहुत बडी आबादी और उच्च जन्म

दर, और कई समुदायों में इष्ट

गववाह के साि, भारत में

आनुवंगशक गवकारों का प्रसार

अगधक है

PLAN OF TRAINING AND DIAGNOSTIC SERVICE UNDER UMMID

INITATIVE

Fellowship in Genetic

Diagnostic-: 6 month training to

the doctors working in government

hospital in DNA based diagnostic

service for genetic disorder.

NIDAN Kendras -: interested

doctors and hospital will be funded

to establish state-of-art facilities in

molecular science

Aspirational district-: each

entre have to adopt on aspirational

districtand will have to establisha

program for prevention of

thalassemia and newborn

screening for treatable disorder

Possible outcome • 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 genomictechnologies.

• Establish genetic diagnostic centres in different parts of the country which will not onlyprovide patient care services but improve the component of medical genetics training inmedical education &equip medical doctors Of the twenty-first century for the era Ofmolecular medicine.

• Create awareness about genetic disorders amongst clinicians & laypersons, so that thepatients & families get appropriate diagnosis, management & preventive services throughgovernment [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 Ofrare & common genetic disorders.

List of training center

Department of Medical Genetics, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Raibarelly Road, Lucknow, Uttar Pradesh

Division of Genetics, Department of Pediatrics, ll India Institute of Medical Sciences, New Delhi

Genetics Unit, Department of Pediatrics, Maulana Azad Medical College, New Delhi

Department of Clinical Genetics, Christian Medical College, Vellore, Tamil Nadu.

Centre for Genetic Studies and Research, The Madras Medical Mission, Chennai, Tamil Nadu

Diagnostics Division, Centre for DNA Fingerprinting and Diagnostics, Hyderabad, Telangana

Department of Haematology, Christian Medical College, Vellore, Tamil Nadu

ICMR-National Institute of Immunohaematology, KEM Hospital, Parel, Mumbai

List of NIDAN kindra

Lady Harding Medical College (LHMC), Delhi

Nizam’s Institute of Medical Science (NIMS), Hyderabad, Telangana

All India Institute of Medical Science (AIIMS), Jodhpur

Army Hospital Research & Referral, Delhi

Nil Ratan Sircar (NRS) Medical College and Hospital. (Kolkata)

List of Aspirational district

Name of the Mentor Institute

Aspirational District State

LHMC, New Delhi Mewat Haryana

CDFD, Hyderabad Yadgir Karnataka

AIIMS, New Delhi Haridwar Uttarakhand

CMC, Vellore Washim Maharashtra

MAMC, New Delhi Ranchi/Bobaro Jharkhand

SGPGIMS, Lucknow Shrawasti Uttar Pradesh

NIIH (KEM Hospital campus), Mumbai

Nandurbar Maharashtra