Study on stigma faced by people with sickle cell disease
'It (the study) is a milestone in public health and genetic research,' the JSS AHER said in a release here. JSS Medical College is the constituent college of JSS AHER.
The release said the study introduces the ICMR-SCD Stigma Scale for India (ISSSI) – 'the first scientifically validated tool from India to assess the multi-dimensional stigma faced by the people living with SCD and their caregivers.'
Developed under the leadership of Dr. Bonta V. Babu and funded by the ICMR National Task Force Project under the Socio-Behavioural Research Division, the ISSSI is a culturally attuned and linguistically adaptable scale, tailored to the Indian context.
The multi-centric study involved fieldwork across six tribal regions in collaboration with the Central Tribal University, Vizianagaram, Bodoland University, Assam, Parul University, Vadodara, ICMR-RMRC, Bhubaneshwar and JSS Medical College of JSS AHER, Mysuru.
'The scale captures stigma across key domains – familial, illness burden, interpersonal relationships, healthcare interactions and social disclosure – and is now positioned as a vital tool for the National Sickle Cell Anaemia Elimination Mission,' the release stated.
The ISSSI tool is now available for use in clinical settings, community outreach and health systems research, enabling policymakers, clinicians and researchers to address stigma with precision and empathy, according to the university.
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
Time of India
6 hours ago
- Time of India
From Independence to Innovation: How India and Genomics Grew Together
The 1940s saw the beginning of two remarkable stories. First is India's independence in 1947, and second, the pioneering science of genomics in 1944. Over the past eight decades, India's development and the evolution of genomics have reflected each other's spirit, deeply rooted in developing indigenous capabilities, driven by innovation, and inspired by the vision of a better India. Although DNA was discovered in the latter half of the 19th century, when Friedrich Miescher isolated the hereditary material that was later understood to be DNA, the attempt to decode it was made only in 1944 – when Oswald Avery, Colin MacLeod, and Maclyn McCarty demonstrated its role as carrier of genetic information, laying the foundation for the genomic era. The 1950s & 60s witnessed India's investment in building expertise, with the establishment of CSIR, ICMR, and the IITs. Similarly, on the other side, expertise in genomics was evolving, with Rosalind Franklin's X-ray images showing the DNA structure, Watson and Crick deciphering this structure, and early tools for reading it beginning to emerge. During the 1960s and 70s as India launched its space program, expanded higher education, and began investing in biotechnology, on the genomics front, Frederick Sanger, Allan Maxam, and Walter Gilbert developed methods to sequence DNA and genomics witnessed the birth of recombinant DNA technology giving way to the development of the first drug, human insulin, in 1982. The 1990s brought global integration for India. India's market was unlocked because of Economic liberalisation, unleashing new opportunities in IT, healthcare, and biotechnology. It was also a turning point in the genomics revolution with the launch of the Human Genome Project , aided by automated DNA sequencing and the mapping of disease-related genes. The project was aimed at identifying all the genes in human DNA and determining the sequences of the 3 billion base pairs that make up that DNA. The project took 13 years to complete. Its results opened doors to a new era of precision medicine and targeted disease management. In parallel, the dawn of the millennium also ushered in India as a global services hub. For Indian healthcare, this was also the era of several breakthroughs in clinical research and generics. The last couple of decades have been defined by leadership and innovation. India's digital revolution and the start-up boom showed the world its ability to lead in both scale and speed. In genomics, new technologies such as CRISPR genome editing and next-generation sequencing (NGS) have brought rapid improvements in throughput and cost, making NGS mainstream for research and clinical applications. Global quality genetic diagnostic tests, which can identify the root cause of complex diseases, are now available in India at affordable costs. High-end genetic tests developed in India and validated and backed by credible research stand testimony to India's scientific excellence, innovation, and talent, while also reiterating the country's commitment to its Make in India initiative. Population-scale projects like the Genome India Project aimed at sequencing one million genomes, a national effort by the Department of Biotechnology (DBT) to build a comprehensive reference genome for India, reflect India's contribution to advancing genomics, strengthening precision medicine and ensuring that genomics led early intervention and disease management are accessible to India's diverse and dynamic landscape. As we celebrate the 79th year of independent India, this reflection on India's remarkable journey in parallel with the journey of the source code of our life, our DNA, highlights not just the freedom of governance, but the freedom to have healthier, longer, and better lives. The article is written by Dr Venkataswamy Eswarachari, Senior Director, Lab Operations, MedGenome (DISCLAIMER: The views expressed are solely of the author and does not necessarily subscribe to it. shall not be responsible for any damage caused to any person/organisation directly or indirectly)
Time of India
a day ago
- Time of India
Lab-grown rabies antibodies show promise as cheaper, safer alternative
Mumbai: India's public hospitals and dispensaries may soon have a safer, more affordable option for preventing rabies after a suspected rabid dog bite: one already in use in private clinics since 2017 and by BMC since 2019. A post-marketing clinical trial involving more than 4,000 participants, conducted and funded by a pharmaceutical company and recently published in The Lancet, could now pave the way for its large-scale public use. For decades, the life-saving protocol has been the same across public or private health set ups: wash the wound, inject a dose of rabies immunoglobulin if the bite is severe, and follow with multiple doses of anti-rabies vaccine. The possible shift lies in the kind of immunoglobulin used. The relatively new lab-made candidate could replace the animal and human derived versions in use since the 1970s. An immunoglobulin is a concentrated solution of antibodies, injected directly into and around the bite, that offers immediate but short-term protection against the virus, effectively buying time until the vaccine takes full effect. The earliest ones in use have been derived either from rabies-vaccinated horses (Equine Rabies Immunoglobulin - ERIG) or human donated plasma (Human Rabies Immunoglobulin - HRIG). by Taboola by Taboola Sponsored Links Sponsored Links Promoted Links Promoted Links You May Like No annual fees for life UnionBank Credit Card Apply Now Undo In 2016, Serum Institute of India (SII) received permission to make immunoglobulin which has monoclonal (lab-made,RmAb) antibodies. You Can Also Check: Mumbai AQI | Weather in Mumbai | Bank Holidays in Mumbai | Public Holidays in Mumbai | Gold Rates Today in Mumbai | Silver Rates Today in Mumbai "Most private facilities at least in Mumbai have phased out the use of the horse-derived one. While it has been proven safe at large, there are risks associated; it can cause mild allergic reactions or in rare cases a serious adverse event," said Dr Trupti Gilada, city-based infectious disease specialist. The private facilities have moved on to either the human derived or lab-made ones. "Both, human derived one and the lab-made one have high efficacy. The former has risk of infection transmission, though rare. The ones made in labs are safer and more easily available due to ease of largescale production," said Dr Mandar Kubal, another infectious disease specialist. A survey by ICMR published in July on the availability of anti-rabies vaccine and rabies immunoglobulin in health facilities found that, of the 534 facilities surveyed across 15 states and 60 districts -- 467 in the public sector -- 78% still used horse derived immunoglobulin. But even that was out of stock for most apart from a small 20.3% of those surveyed. While BMC uses the lab-made alternative, it is no stranger to shortages; at the moment it is short of rabies vaccine shots. A senior doctor from one of the four BMC-run medical college hospitals, said, "Mumbai has a heavy burden of dog bite cases and early on BMC decided to move on from animal derived ones due to risks associated. We either use generic human derived immunoglobulin or largely lab-made alternatives." But this lab-made alternative is still to make its way into the National Guidelines for Rabies Prophylaxis. The ICMR survey states, "RmAb presents as a promising alternative to both HRIG and ERIG. Compared to ERIG, RmAb offers the potential scope for large-scale production with standardised quality, elimination of animal use in the manufacturing, and reduced risk of adverse events. "It is cheaper compared to HRIG. Studies have shown that RmAbs are safe for human use, but... [there is] need for larger clinical trials and post-marketing surveillance to assess the safety and efficacy of RmAbs in the Indian setting." The Serum Institute–funded post marketing trial of its lab-made product compared with horse-derived immunoglobulin found to be equally effective in preventing rabies, with slightly higher average antibody levels on day 14. It was linked to fewer mild adverse events (11 vs. 17), and no serious reactions related to RmAb were reported, compared with one serious reaction related to ERIG. "Anti-rabies vaccines and immunoglobulins are severely in shortage across the country. Monoclonal antibodies is the answer [due to scalability] and it needs to be included in the national guidelines," said one of the authors of the ICMR survey. Stay updated with the latest local news from your city on Times of India (TOI). Check upcoming bank holidays , public holidays , and current gold rates and silver prices in your area.
Time of India
a day ago
- Time of India
Lab-grown rabies antibodies show promise as safe alternative
MUMBAI: India's public hospitals and dispensaries may soon have a safer, more affordable option for preventing rabies after a suspected rabid dog bite: one already in use in private clinics since 2017 and by BMC since 2019. Tired of too many ads? go ad free now A post-marketing clinical trial involving more than 4,000 participants, conducted and funded by a pharmaceutical company and recently published in The Lancet, could now pave the way for its large-scale public use. For decades, the life-saving protocol has been the same across public or private health set ups: wash the wound, inject a dose of rabies immunoglobulin if the bite is severe, and follow with multiple doses of anti-rabies vaccine. The possible shift lies in the kind of immunoglobulin used. The relatively new lab-made candidate could replace the animal and human derived versions in use since the 1970s. An immunoglobulin is a concentrated solution of antibodies, injected directly into and around the bite, that offers immediate but short-term protection against the virus, effectively buying time until the vaccine takes full effect. The earliest ones in use were derived either from rabies-vaccinated horses (Equine Rabies Immunoglobulin - ERIG) or human donated plasma (Human Rabies Immunoglobulin - HRIG). In 2016, (SII) received permission to make immunoglobulin which has monoclonal (lab-made,RmAb) antibodies. "Most private facilities at least in Mumbai have phased out the use of the horse-derived one. While it has been proven safe at large, there are risks associated; it can cause mild allergic reactions or in rare cases a serious adverse event," said Dr Trupti Gilada, city-based infectious disease specialist. The private facilities have moved on to either the human derived or lab-made ones. "Both, human derived one and the lab-made one have high efficacy. Tired of too many ads? go ad free now The former has risk of infection transmission, though rare. The ones made in labs are safer and more easily available due to ease of largescale production," said Dr Mandar Kubal, another infectious disease specialist. A survey by ICMR published in July on the availability of anti-rabies vaccine and rabies immunoglobulin in health facilities found that, of the 534 facilities surveyed across 15 states and 60 districts -- 467 in the public sector -- 78% still used horse derived immunoglobulin. But even that was out of stock for most apart from a small 20.3% of those surveyed. While BMC uses the lab-made alternative, it is no stranger to shortages; at the moment it is short of rabies vaccine shots. A doctor from one of the four BMC-run medical college hospitals, said, "Mumbai has a heavy burden of dog bite cases and early on BMC decided to move on from animal derived ones due to risks associated. We either use generic human derived immunoglobulin or largely lab-made alternatives." But this lab-made alternative is still to make its way into National Guidelines for Rabies Prophylaxis. The ICMR survey states, "RmAb presents as a promising alternative to both HRIG and ERIG. Compared to ERIG, RmAb offers the potential scope for large-scale production with standardised quality, elimination of animal use in the manufacturing, & reduced risk of adverse events. "It is cheaper compared to HRIG. Studies have shown that RmAbs are safe for human use, but... [there is] a need for larger clinical trials and post-marketing surveillance to assess the safety and efficacy of RmAbs in the Indian setting." The Serum Institute-funded post marketing trial of its lab-made product compared with horse-derived immunoglobulin found to be equally effective in preventing rabies, with slightly higher average antibody levels on day 14.
