Deceased Organ Donation Data in India

Currently, India has a Deceased Organ Donation rate of 0.52 donors per million population, which is very less as compared to the top 10 countries all over the world in terms of deceased organ donation rate.

NOTTO – National Organ and Tissue Transplant Organisation

The National Organ and Tissue Transplant Organization (NOTTO) is a National level organization set up under The Directorate General of Health Services, Ministry of Health and Family Welfare, Government of India located at 4th and 5th Floor of Institute of Pathology (ICMR) Building in Safdarjung Hospital New Delhi. The establishment of NOTTO has been mandated as per the Transplantation of Human Organs (Amendment) Act 2011.

NOTTO functions as the apex centre for All India activities of coordination and networking for procurement and distribution of Organs and Tissues and registry of Organs and Tissues Donation and Transplantation in the country. In addition to its national role, NOTTO is also the nodal networking agency for Delhi and the National Capital Region, and network for Procurement Allocation and Distribution of Organs and Tissues in Delhi and the National Capital Region

NOTTO has two divisions:

National Human Organ and Tissue Removal and Storage Network: This division of the NOTTO is the nodal networking agency for Delhi and shall network for Procurement Allocation and Distribution of Organs and Tissues in Delhi.
National Biomaterial Centre (National Tissue Bank): This division addresses the component of tissue donation and registration of tissue Banks all over the country.

Function & Activities Of NOTTO

As a part of its mandate, NOTTO lays down policy guidelines and protocols for various functions; networks with simila regional and state level organizations; coordinates and organizes trainings for various cadre of workers; complies all registry data from States and Regions; monitors transplantation activities in the Regions and States and maintains a data-bank in this regard; creates awareness and promotes organ donation and transplantation activities.

Some of its other functions are the dissemination of information to all concerned organizations, hospitals and individuals, assisting in data management for organ transplant surveillance & organ transplant, Organ Donor registry and consultancy support on the legal and non-legal aspects of donation and transplantation.

NOTTO also coordinates the procurement and allocation of organs and tissues for transplantation when an organ is allocated outside the region. As Health is a State Subject, each State in India has its own Nodal agency that coordinates the procurement, allocation and other aspects of organ donation and transplantation under the Health Ministry of that State. However, once an organ has to be moved out of a region, NOTTO becomes the Nodal Agency that coordinates the procurement and allocation of organs and tissues

ROTTO – Regional Organ and Tissue Transplant Organisation

The Regional Organ & Tissue Transplant Organisation (ROTTO), is the regional government organisation. There are five ROTTOs in India. They function as separate regional branches that ensure protocol amongst the state organisations enlisted under each of them. They are all based in a Government Hospital in the region. Each ROTTO manages about 5-7 States currently and is responsible for activities of coordination as well as networking for procurement, distribution and transplantation of organs and tissues between their respective State Organisations.

There are 5 ROTTO’s across the country. They are all also functioning as State Organ & Tissue Transplant Organisations (SOTTOs) in the respective States where they are based.

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SOTTO – State Organ and Tissue Transplant Organisation

State Organ & Tissue Transplant Organisations are the Nodal Agencies that exist at the state level and are responsible for ensuring proper functioning and coordination between local institutions to promote registration of organ and tissue donors, as well as keeping track of distribution of organs and tissues to recipients. They are the third part of the three-tiered system. In an exceptional case, NOTTO acts as a SOTTO for Delhi and the National Capital Region.

At the moment, many States in India do not have SOTTOs, even in those States in which agencies have been coordination organ donation and transplantation. This is because NOTTO came into existence much after these States had already started their activities. In those States which currently have a flourishing Organ Donation and Transplant systems, most of these Nodal Agencies are NGOs or Society’s which have been given a mandate by the State Government to run the programme.
For States to get funds from the Government and set up SOTTOs in their States, they are required to send a proposal to the DGHS, MoHFW, New Delhi. Unfortunately, many States have not sent their proposals. Those where programmes are already running, are happy with running their Nodal agencies through NGOs. Others have yet to send proposals to the Government and get their programme started, and a few have sent proposals.

In 2018 the Union Government has proposed the creation of 10 SOTTOs in various States.