NRHM – DPH

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NATIONAL RURAL HEALTH MISSION – (NRHM-1)

(Project Period: Dec 2011 – March 2013)

Title: Pilot project to set a model for district wise identification and prevention of Duchenne Muscular Dystrophy and Spinal Muscular Atrophy in 5 health unit districts of Tamil Nadu viz. Coimbatore, Tirupur, Dharapuram, Erode and Salem.

As a grass root level initiative, our current programmes are on identification and prevention of these lethal genetic disorders in rural areas of Tamil Nadu. We carried out a pilot project from December 2011 to March 2013 entitled, “Identification and Prevention of Pediatric Neuro-muscular Disorders- viz., Duchene Muscular Dystrophy and Spinal Muscular Atrophy covering Five Health Unit Districts in Tamil Nadu” jointly funded by the National Rural Health Mission, Government of India and the Department of Public Health and Preventive Medicine, Government of Tamil Nadu. The following activities were carried out systematically for the successful completion of the project in a sequential manner.

1. Networking with District Collectors, Deputy Director of Health Services (DDHS) about the need and purpose of the project.

2. Awareness and training of all medical and paramedical personnel in the public health system

3. Door to door survey of the rural population with the specially designed forms by village health nurses

4. Scrutinisation of the filled forms at MDCRC

5. First and second level screening of suspected cases by Primary Health Centre(PHC) doctors and neurologists respectively and sample collection

6. DNA diagnosis

7. Genetic Counseling and carrier sampling

8. Carrier Diagnosis and Counseling

9. Multidisciplinary Care clinics with the help of a panel of specialist physicians to improve the quality of life.

 

Outcome of the Pilot Project:

Genetic diagnosis was carried out for 328 children affected with DMD and 200 children affected with SMA.

Genetic Counseling– Offered for all the families identified

Multidisciplinary care was provided to 131 affected children.

Our effort at the rural population in the 5 health unit districts covered has established the fact that the prevalence of the disorder has been stunning, with 2.4 times more than that of the global figures., ie 1 in 1400 live male births from our experience.

 

NATIONAL RURAL HEALTH MISSION – (NRHM-2)

 (Project Period: March 2013 – March 2014)

Title: Expansion of Pilot project towards Identification and Prevention of Pediatric Neuro-Muscular disorders – viz., Duchenne Muscular Dystrophy and Spinal Muscular Atrophy covering three Districts in Tamil Nadu viz., Karur, Namakkal, Nilgiris.

Networking & Introduction with District Collectors, Deputy Director Health Systems in the selected 3 Health Unit Districts, (HUD) viz., Karur, Namakkal, Nilgris of Tamil Nadu for the purpose of the project and the services offered. Training program conducted for all the field staffs including Block Medical Officers in the 3 HUDs for identification of DMD & SMA based on the questionnaires. As a part of the project, we received the list of muscular Dystrophy children from DDRO & SSA and conducted a screening camp with the help of Neurologist to collect the blood samples for Genetic analysis.

 

Karur & Namakkal Districts:

This year being the 150th birth anniversary of Swami Vivekananda, we have commenced a student’s initiative to help the VHNs and complete the door to door survey under the NRHM-DPH- MDCRC program. Our initiative will target the student’s population. We have organized the meeting to address the Youth Red Cross, National Service Scheme, Community Social Service and National Cadet Corps Coordinators of the colleges in Karur & Namakkal district.  In this meeting, we explain the roles of Academic Institutions in the project in detail and create a link between VHNs and student volunteers. VHNs will help the students geographically to complete the door to door survey.

 

For Nilgiris:

We have trained ASHA’s for door to door survey, for 4-Blocks in Nilgiris.

The children who are identified by the survey are taken up for 1st level screening by the PHC doctors. Cases clinically suspected for DMD/BMD/SMA will further undergo 2nd level differential diagnosis by a panel of experienced neurologists and blood samples will be taken up for molecular analysis. Genetic counseling followed by carrier analysis is offered for the affected families towards the prevention. Since there is no cure, multidisciplinary care is offered to improve the quality of life for the children and effectively manage the disorder as well as training for the taluk level doctors on multidisciplinary care for DMD was also carried out.

 

Outcome of the Expansion Project till date:

Genetic diagnosis was carried out for 120 children affected with DMD and 40 children affected with SMA

Genetic Counseling– Offered for all the families identified

Multidisciplinary care was provided to 40 affected children.

Our effort at the rural population in the 3 health unit districts covered has established the fact that the prevalence of the disorder has been again, with 2.4 times more than that of the global figures.

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WHY

Public Health to us at MDCRC is about the community at large. The health of the community at different levels and when seen through different perspectives becomes a subject which is complete, holistic and is a melting pot for a plethora of technical disciplines. At MDCRC we do align with a goal of working for community health by working on modular projects related to Women and Child health, disease prevention, Health informatics, Community building and its associated research, Water resources, Arts, Indic Sciences, Cultural issues which are relevant to the contemporary generation. The style which we adopt is to focus on totally neglected aspects and form a working model towards a better situation. The need for this approach is to bring back the glory of humanity in general and which percolates to a healthier India.

The disorders in current focus are Orphan disorders, meaning disorders whose numbers are said to be less (in the Western diaspora) which neither doesn’t majorly impact the community’s currently used health metric nor does it provide a base for extensive drug research and its production. This view is only true until the numbers are low and also the way we look at Public health in general. There had been no concerted efforts in the domain of Orphan disorders in India. Mission of ours then, was to bring the science, the services pertaining to a particular problem statement and which thereby gives rise to an evolution of a model. This forges a way of approaching Health from a community standpoint thereby offering an impactful experience to all stake-holders. This is where the core culture MDCRC comes in where we believe that in Public Health domain in particular, the science and the associated services need to reach mankind at large without a number bias or number crunching.

With a background in Biochemistry and Genetics, Dr. Lakshmi, in 2006 had started working on genetic disorders with specific emphasis on community building.

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