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