<p>Having realised that the dearth of data was a major hurdle for research, doctors have now started collating liver transplant-related information to start the first comprehensive liver transplant registry in the country.</p>.<p>A group of medical professionals under the umbrella, the Liver Transplantation Society of India (LTSI) has been talking to hospitals performing liver transplantation to share data with them.</p>.<p>The LTSI is a two-year-old professional body of transplant surgeons.</p>.<p>Members of LTSI will collate data from across private and government hospitals performing liver and cadaver transplantations, that can be used for academics and research.</p>.<p class="CrossHead"><strong>Live liver transplant</strong></p>.<p>Dr Sonal Asthana, transplant surgeon from Bengaluru who worked on designing the registry, said even as India was performing the second largest number of live liver transplants in the world, there was a drawback for experts.</p>.<p>“It is difficult to get a sense of the situation, the challenges involved, complications or indications. When we tried to gather India-specific data, there was nothing,” he said.</p>.<p>The registry is set to go live on August 15 and so far, eight centres from across the country have signed for it.</p>.<p>“These amount to 40% transplant activity. Together, they perform about 800-1,000 transplants a year,” he said, adding that the others would come on board soon.</p>.<p>Dr Mathew Jacob, joint secretary, Liver Transplantation Society of India, said they had been approaching hospitals to enrol, after which they would be trained to understand the ethical aspects of sharing information.</p>.<p>Patient demographics, their survival rate, success rate and age-specific data would be among the other information to be made available. “It is to keep people informed. It helps guide the policymakers as well,” he said.</p>.<p>Liver Transplantation Society of India is working with Metamagics, a startup, to keep data anonymous. “The reports will be compiled by experts based on the data gathered from hospitals,” he said.</p>.<p class="CrossHead"><strong>Restrictions</strong></p>.<p>Though the data will be made available to researchers, there could be restrictions.</p>.<p>“The problem with free access is wrong interpretation. Raw data will be given limited access. Private hospitals refuse to share data many a time because they fear misinterpretation or lack of anonymity, we have addressed both,” he said.</p>
<p>Having realised that the dearth of data was a major hurdle for research, doctors have now started collating liver transplant-related information to start the first comprehensive liver transplant registry in the country.</p>.<p>A group of medical professionals under the umbrella, the Liver Transplantation Society of India (LTSI) has been talking to hospitals performing liver transplantation to share data with them.</p>.<p>The LTSI is a two-year-old professional body of transplant surgeons.</p>.<p>Members of LTSI will collate data from across private and government hospitals performing liver and cadaver transplantations, that can be used for academics and research.</p>.<p class="CrossHead"><strong>Live liver transplant</strong></p>.<p>Dr Sonal Asthana, transplant surgeon from Bengaluru who worked on designing the registry, said even as India was performing the second largest number of live liver transplants in the world, there was a drawback for experts.</p>.<p>“It is difficult to get a sense of the situation, the challenges involved, complications or indications. When we tried to gather India-specific data, there was nothing,” he said.</p>.<p>The registry is set to go live on August 15 and so far, eight centres from across the country have signed for it.</p>.<p>“These amount to 40% transplant activity. Together, they perform about 800-1,000 transplants a year,” he said, adding that the others would come on board soon.</p>.<p>Dr Mathew Jacob, joint secretary, Liver Transplantation Society of India, said they had been approaching hospitals to enrol, after which they would be trained to understand the ethical aspects of sharing information.</p>.<p>Patient demographics, their survival rate, success rate and age-specific data would be among the other information to be made available. “It is to keep people informed. It helps guide the policymakers as well,” he said.</p>.<p>Liver Transplantation Society of India is working with Metamagics, a startup, to keep data anonymous. “The reports will be compiled by experts based on the data gathered from hospitals,” he said.</p>.<p class="CrossHead"><strong>Restrictions</strong></p>.<p>Though the data will be made available to researchers, there could be restrictions.</p>.<p>“The problem with free access is wrong interpretation. Raw data will be given limited access. Private hospitals refuse to share data many a time because they fear misinterpretation or lack of anonymity, we have addressed both,” he said.</p>