SPC-MDCRC-NHM-DPH

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SPC-MDCRC-NHM-DPH Project on Identification and Prevention of Duchenne Muscular Dystrophy (DMD)

VISION 2020

Not a kid with Duchenne Muscular Dystrophy to be left unidentified in Tamil Nadu by 2020

 
Molecular Diagnostics, Counseling, Care and Research Center (MDCRC), is a charitable foundation working on Duchenne Muscular Dystrophy (DMD). Genetic Diagnosis, Counseling including Genetic, Psychological & Reproductive counseling, Multidisciplinary Clinical care and Rehabilitation services are all offered to the children affected with DMD at our center, totally free of cost.

We completed a Pilot & Expansion Project on Identification & Prevention of Pediatric Neuro-Muscular Disorders viz., Duchenne Muscular Dystrophy and Spinal Muscular Atrophy in 8 HUDs of Tamil Nadu during the years 2012-2014. These were predominantly rural areas located in Coimbatore, Tirupur, Dharapuram, Erode, Salem, Namakkal, Karur and Nilgiris under MDCRC-NRHM-DPH project.

The numbers from this pilot and expansion project were very revealing. While the global rate of prevalence is only 1:3500 live male births, our project suggested a figure of 1:1400 live male births; 2.5 times more than the global average.

This inspired us to find out the prevalence rate in the entire state of Tamil Nadu and initiate strategies to prevent further genetic transmission of the disease. On the basis of the astounding findings in the above-mentioned projects, we have now been sanctioned by the State Planning Commission and Health & Family Welfare Department to cover the entire Tamil Nadu state both rural and urban under the current project, titled, ‘Integrated working model to identity, prevent and set base for neglected Pediatric disorder-case of Duchenne Muscular Dystrophy. (Ref- (i) GO(MS), No.27 H&FW dated 27.01.2016; (ii) GO(MS), No.124 H&FW dated 01.03.2016

Very briefly, the goal of this project is to ensure that by the year 2020, not a child with DMD goes unidentified. This would give us an opportunity to provide genetic counseling to this disorder (which accounts for nearly 60%).

With this objective in view, we’d be conducting screening camps for suspected DMD children in all the 42 health unit districts of Tamil Nadu. We will also be training the entire DPH personnel including Rural and Urban PHC doctors, RBSK doctors, CHNs, SHNs, VHNs also the SSA supervisors, special educators, CDPOs and ICDS supervisors in a very simple screening procedure to identify children with DMD. Further complete genetic diagnosis, counseling towards prevention in the future generation, rehabilitation and care services also form a part of the project. The entire effort will meet the objective besides capacity building and integrating the comprehensive approach into the health system.

 

Together we make a difference!!

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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