Launched on April 27 by the Indian Council of Medical Research (ICMR), the registry is important for determining the precise number of patients, age of onset of symptoms, age of diagnosis (to determine the delay for making the diagnosis), course of disease/natural history of disease.
Recognising the importance of data to treat people with rare diseases, the Indian Council of Medical Research (ICMR) has launched The Indian Rare Disease Registry on April 27 during the National Initiative for Rare Diseases (NIRD).
ICMR launched this registry in collaboration with All India Institute of Medical Sciences (AIIMS), Jawaharlal Nehru University (JNU), and PRESIDE and its first step is to identify patients.
More than 70 million people in India suffer from a plethora of rare diseases, manifesting in childhood, which remains with them throughout their lives.
Registry is important for determining the precise number of patients, age of onset of symptoms, age of diagnosis (to determine the delay for making the diagnosis), course of disease / natural history of disease.
Welcoming the move, Dr Parag Tamhankar, Divisional Head at Parel-based Genetic Research Centre, National Institute for Research in Reproductive Health (NIRRH), said, “It is a good step. There are 23,000 genes in the human body, among which only 7,000 diseases are known. We keep identifying new diseases. So, we need to have data to know other important diseases and how to tackle them with correct treatment. Also, awareness among medical experts and people about rare diseases is extremely important. This will help avoid wrong diagnoses remedy. With the help of good database, we can give proper treatment by selecting right technology.”
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