The Indian Council for Medical Research (ICMR) on Monday will release National Thalassemia guidelines aiming to ensure uniform treatment as per the Indian settings to the persons with the genetic blood disorder at around 100 point of care facilities spread across the country.
Sources in the ICMR said that so far the treatment has been based on the guidelines implemented in western countries, particularly Europeans one. However, for the first time, the guidelines have been developed keeping in mind the Indian settings, availability of new therapies and medical intervention and the need of the patients in India.
The document ‘Evidence-based IAP-PHO Guidelines for the Diagnosis and Management of Thalassemia-2023’ has been prepared by the country’s top hematologists, health experts and scientists in the sector including those from the ICMR after intense research for the last one-and-a half years. The first-of-its kind guidelines will be released at an event on the World Thalassemia Day which is May 8.
The provisions for Thalassemia care in the guidelines has also been picked from the comprehensive guideline document on the Prevention and Control of Hemoglobinopathies in India which was released in 2016 by the Union Health Ministry in partnership with the National Health Mission, the Blood Cell and the Rashtriya Bal Swasthya Karyakram.
Some of the key features are protocols for early diagnosis and intervention for newborn screening, facilitating stem cell transplant in possible cases and management of co-morbidities.
The official said that management of the thalassemia syndromes can be challenging due to the numerous potential disease complications and the lack of available therapies other than transfusion and hematopoietic cell transplantation, both of which have associated morbidities and costs.