Registry

 

A patient registry is an organized system that uses observational study methods to collect uniform data (clinical and demographic) to evaluate specified outcome for a population which could be defined by a particular disease, condition or exposure and that serves as a predetermined scientific (researchers), clinical, or policy purpose. Recent scientific and medical advances have led to substantial changes in the treatment of many neuromuscular conditions. New therapeutic strategies are being developed and for some of these treatments, plans for large studies involving participants from more than one country are already in place.

For a developing country like India, with a population more than a billion, the expected cases of Duchenne Muscular Dystrophy (DMD) and Spinal Muscular Atrophy (SMA), the most lethal childhood diseases is expected to be rather high. Moreover, the number of cases in our country remains unknown. Having a grasp of this knowledge can increase external support for such lethal diseases which are currently orphaned. The initiatives on identification and registering patients with DMD & SMA will pave way towards efficient management and prevention of the disorder. This initiative on creation of the registry which is

1. Descriptive – covering Demographic details

2. Analytical – covering CPK & Molecular data

3. Preventive – covering Carrier Analysis and Prenatal Diagnosis

This model of bringing together the Descriptive, Analytical and Preventive registry which addresses comprehensively the needs of the patient community will be a world class approach. This complete information on registry will help

1. Government bodies to understand about the disorder and its prevalence to take appropriate steps through policy makers.

2. Being an important tool in connecting network of expertise.

3. Foster to take lab to bed side.

4. Increase the knowledge about diseases leads to improved care for the patients.

5. Contribute to improved awareness and understanding of disease and treatment practices where the patient is the “winner”.

6. Encourage the parent bodies to create network amongst affected families to effectively handle and manage the disorder.

This type of registry is first of its kind in India. This effort on registry will pave way to understand better about the prevalence of the disorders among our population, to facilitate networking of clinicians and researchers and to enable dissemination of updates on standards of care, upcoming research programs and therapies in the pipeline.

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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