For organ donation, new registry with waiting list which patients can track

This is significant, sources said, because the portal will allow patients to check their position on the waiting list, as per recommendations of national-level experts. The portal also will connect all the 712 transplant centres, 31 state-level bodies and five regional bodies involved in the process.

Asked about the new measures, NOTTO director Dr Anil Kumar told The Indian Express: “The portal currently in use allows hospitals to register their patients. However, there are some states from which we get aggregate data on the number of transplants but not the details of individual cases.”

According to sources, with several instances of illegal organ trade coming to light in recent years, NOTTO will also make efforts to make the process of allocation more transparent, sources said. For instance, they said, the portal will require hospitals to upload patients’ health records as well as deliberations of the expert committees that approve the transplantation. “These documents will not be publicly visible but will be accessible to officials from NOTTO, ensuring that they are able to detect any fraudulent practices,” the sources said.

Besides, the portal will record all mandated processes for allocation of organs to ensure that protocols put in place separately for deceased and living donors are followed. Besides, it will attempt to capture data on the outcome of transplants with provisions for uploading health data of patients during follow-ups. Asked about this measure, NOTTO chief Kumar said, “While there is a format to record the outcome data even now, it is not really captured by most transplant centres.”

Experts in the sector, however, pointed out that the creation of a national registry and waiting list comes with its own set of challenges, primarily the uniform allocation of organs across the country.

While NOTTO has a scoring method of its own based on various parameters, such as age, stage of disease and organ match, to determine a patient’s slot on the list, there are still states that follow their own scoring pattern.

For instance, they said, states such as Telangana, Maharashtra and Gujarat have their own scoring methods. Others like West Bengal, Karnataka, Rajasthan and Kerala prioritise those who registered earlier as recipients. Tamil Nadu follows another method where the state is divided in three regional zones with organs remaining within their specific zone, and if unutilised, to be allocated to other zones. Madhya Pradesh and Chattisgarh give priority to patients who do not have a living donor or the matched living donor has refused to donate.

According to the experts, NOTTO should come up with common variables that every state would be required to provide at the time of registration. “The registry format may have common essential and optional parameters, which would be needed to make the allocation process uniform. For recipients with the same score, the organ would go to whoever was registered before for a transplant,” states a report on the national-level consultations.

Asked about these challenges, NOTTO chief Kumar said, “We are speaking to all the states in order to ensure that they all follow the same scoring pattern for allocation of organs. We will make any changes necessary to our formula. The idea is to have everyone on board.”