Home > News > Govt to build database on Sickle Cell Disease, IJMR warns children with SCD at risk of Covid -19 related complications | India News

Govt to build database on Sickle Cell Disease, IJMR warns children with SCD at risk of Covid -19 related complications | India News


NEW DELHI: The online performance dashboard “Empowering Tribals, Transforming India” launched by the Centre last week to monitor all schemes impacting tribal welfare, has also brought into focus the need to create a database of tribal population impacted by Sickle Cell disease to link them to treatment, welfare schemes and step up awareness for prevention.
Sickle Cell Disease (SCD) is a genetic condition that affects haemoglobin. Haematopoietic stem cell transplantation (HSCT) is currently the only established curative treatment for SCD.
The impact of the disease is felt most severely in the central Indian states of Gujarat, Maharashtra, Odisha and Chhattisgarh. Based on a nationwide screening conducted by ministry of tribal affairs in coordination with Indian Council of Medical Research between 2016-18, out of over 1.13 crore persons screened over 94 lakhs were seen to have the trait and 47,311 affected by the disease.
The Indian Journal of Medical Research in an editorial in June this year warned that data on the influenza H1N1 pandemic in 2009 showed increased susceptibility to virus induced complications among children with SCD. They recommended that SCD may, therefore, be included in the list of risk factors for severe complications of COVID-19 infection.
The editorial states that annually, over 3 lakh infants are born with the homozygous (the organism has two copies of the same allele for a gene) form of the disease, about two-thirds of them in Africa. Nigeria, India and the Democratic Republic of Congo shoulder half of the global burden. These numbers are expected to rise above 4 lakh per year by 2050.
The National Health Mission has a dedicated programme focused on population screening and standardising therapy and the union health ministry has the guidelines for the National Haemoglobinopathy Programme with focus on screening. However, the IJMR editorial states that there is a need for more public-private partnerships to implement and sustain early diagnosis and interventions to reduce the high under-5 mortality.
To step up awareness, now the new dashboard developed by the ministry of tribal affairs (MoTA) takes you to a link to the “sickle cell support corner.” The sickle cell disease support portal (SCDSP), which was launched in June by MoTA, will collect data from states and also allows individuals with the disease or trait to register on the portal through a web-form along with a medical certificate, investigation report, disability certificate or other supporting documents.
As of now there is no common database in place and MoTA sees the SCDSP as the route to enable data driven policy making, connect individuals with SCD to welfare schemes, disease-specific healthcare services and validated health information. The ministry will be setting up a committee led by the joint secretary in-charge to coordinate data sharing with the state authorities.

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