Citing space constraints in Census questionnaires and increase in workload of already-overworked enumerators with data related works, the Registrar General of India has turned down the proposal of the Indian Organisation for Rare Diseases (IORD), to incorporate patient data collection in the Census 2021 programme.
“By just placing a column on rare disease in the Census 2021 questionnaire, we can identify patients across the country and their demographics easily. This opportunity will not come for another decade if we miss capitalising it this time. The data acquired from this census will result in a huge revolution in RD research, orphan drug development and treatment as India has huge numbers, or one-thirds of global rare disease patients,” IORD president Dr Ramaiah Muthyala explained.
He lamented that though 6-8 per cent of Indians, or approximately 9-10 crore people, suffer from one of the 7,000-plus identified rare diseases, the country does not have any empirical evidence for estimating disease burden or developing affordable orphan drugs. India does not even have a proper policy on rare diseases as the Union Health Ministry is still working to revise its promise of an initial corpus fund of Rs 100 crore for the treatment of patients with rare genetic diseases, many of them children.
By including the data in the census would help in getting to know their actual number and hence adequate attention to policies. However, sources said that the RGI has refused to include the column on rare diseases stating that the questionnaire was already quite exhaustive and it was not feasible to overload the enumerators with more works.
According to the World Health Organisation (WHO), there are estimated 5,000-8,000 rare diseases, conditions that are primarily chronic and life-threatening. Most of these are genetic in nature, with the majority manifesting in childhood. In fact, recognising the importance of data to treat rare disease sufferers, the Indian Council of Medical Research (ICMR) had two years back announced the creation of Indian Rare Disease Registry, but the project is yet to take off.
“As the diagnosis of such cases is difficult and not available at all levels of facility it will not reflect the burden of disease. The ICMR is going to initiate soon Indian Rare Diseases Registry to address unmet needs of people with rare diseases,” as per the ICMR.
“In fact, the council had announced the creation of registries in April 2017. The intent of placing the column in Census 2021 is neither to duplicate nor to replace the efforts of the ICMR. We seek to work with the council,” Muthyala said.
In India around 70 million are affected by rare diseases. RDs include inherited cancers, autoimmune disorders, congenital malformations, and infectious diseases amongst others include Hemangiomas, Hirschsprung disease, Gaucher disease, cystic fibrosis, muscular dystrophies and Lysosomal Storage Disorders.
Source: The Pioneer
https://www.dailypioneer.com/2019/india/rgi-refuses-to-incorporate-patient-data-in-census.html
