ICMR launches registry of rare diseases

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

ICMR launches registry of rare diseasesRecognising 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 […]