• India’s still nascent organ transplant programme is making progress, and it’s not just things like life-saving traffic green corridors that are smoothening out the wrinkles.
• Efforts to increase the knowledge base are taking off and crucial policy decisions are taking shape, triggered by recent events in organ transplants.
• On October 5, officials of the National Organ and Tissue Transplant Organisation (NOTTO), National Informatics Centre (NIC) and other stakeholders will meet to draw a road map for documenting patient progress, networking all transplant hospitals of the country and also figure out the official policy to treat out-of-turn requests for organs.
• A critical new initiative plans to map post-transplant survival rate of patients. “The NIC is developing a national registry of organ and tissue donors. “It is partly developed and is accessible through the NOTTO site. The registry will help in maintaining data and surveillance, but we also want it to be used for academic research and to study outcome. After the transplant, patients have to be followed up and even that data should be fed, which will help figure out the post-transplant survival rate.”
• The Indian Society for Organ Transplant (ISOT) started work on a similar registry a few years ago.
• “The sole aim of this registry was to see the outcome of the transplant, but only few centres shared their data. Doctors and hospitals resisted it.”
• If NOTTO is successful, it could possibly be a larger collation than ISOT’s, given that 125 hospitals are linked to the NOTTO registry that the NIC is developing. But it’s an ambitious plan. Those in the field point out that most transplants are taking place in private hospitals, and until the government makes it mandatory for them to share data, they will remain cagey.

Family ties

• About 10 days ago, approvals had to be issued overnight by Union Health Ministry officials to allow a brain-dead man’s kidney to be donated to his brother, who had been on dialysis for two years and was at number 162 in Mumbai’s waiting list for kidneys. The approval helped him jump the queue.
• “NOTTO may have to modify the policy [on cadaver organ donations].
• Officials say that while the national registry will have robust data of donors that can be viewed by all hospitals, and where they can feed in details of patient progress, there are concerns ranging from maintaining donor confidentiality to ensuring that it is an inclusive exercise.
• Besides, the network that the government is creating is not as inclusive as it should be. “There are only 200-300 licensed hospitals to harvest organs and do transplants.

ABOUT National Organ and Tissue Transplant Organization (NOTTO)

• National Organ and Tissue Transplant Organization (NOTTO) is a National level organization set up under 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. It has following two divisions:
• “National Human Organ and Tissue Removal and Storage Network”
• “National Biomaterial Centre”.

“National Human Organ and Tissue Removal and Storage Network”

• This has been mandated as per the Transplantation of Human Organs (Amendment) Act 2011. The network will be established initially for Delhi and gradually expanded to include other States and Regions of the country. Thus, 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.

Function/Activities

• National Network division of NOTTO would function as 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. The following activities would be undertaken to facilitate Organ Transplantation in the safest way in shortest possible time and to collect data to develop and publish National registry:-

At National Level :

• Lay down policy guidelines and protocols for various functions.
• Network with similar regional and state level organizations.
• All registry data from States and Regions would be compiled and published.
• Creating awareness, promotion of organ donation and transplantation activities.
• Co-ordination from procurement of organs and tissues to transplantation when organ is allocated outside the region.
• Dissemination of information to all concerned organizations, hospitals and individuals.
• Monitoring of transplantation activities in the Regions and States and maintaining data-bank in this regard.
• To assist in data management for organ transplant surveillance & organ transplant and Organ Donor registry.
• Consultancy support on the legal and non-legal aspects of donation and transplantation.
• Coordinate and Organize trainings for various cadre of workers.

For Delhi and NCR

• Maintaining the waiting list of terminally ill patients requiring transplants.
• Networking with transplant centres, retrieval centres and tissue banks.
• Co-ordination for all activities required for procurement of organs and tissues including medico legal aspects.
• Matching of recipients with donors.
• Allocation, Transportation, Storage and Distribution of Organs and Tissues within Delhi and National Capital Territory region.
• Post-transplant patients & living donor follow-up for assessment of graft rejection, survival rates etc.
• Awareness, Advocacy and Training workshops and other activities for promotion of organ donation.

National Biomaterial Centre (National Tissue Bank)

• The Transplantation of Human Organs (Amendment) Act 2011 has included the component of tissue donation and registration of tissue Banks. It becomes imperative under the changed circumstances to establish National level Tissue Bank to fulfill the demands of tissue transplantation including activities for procurement, storage and fulfil distribution of biomaterials.
• The main thrust & objective of establishing the centre is to fill up the gap between ‘Demand’ and ‘Supply’ as well as ‘Quality Assurance’ in the availability of various tissues.

The centre will take care of the following Tissue allografts:-

• Bone and bone products e.g. deep frozen bone allograft, freeze dried bone allograft, dowel allograft, AAA Bone, Duramater, facialata, fresh frozen human amniotic membrane, high temperature treated board cadaveric joints like knees, hips and shoulders, cadaveric cranium bone graft, loose bone fragment, different types of bovine allograft, used in orthodontics
• Skin graft
• Cornea
• Heart valves and vessels

Other tissues shall be gradually included.

Activities

• Coordination for tissue procurement and distribution
• Donor Tissue Screening
• Removal of Tissues and Storage
• Preservations of Tissue
• Laboratory screening of Tissues
• Tissue Tracking
• Sterilization
• Records maintenance, Data Protection and Confidentiality
• Quality Management in tissues
• Patient Information on tissues
• Development of Guidelines, Protocols and Standard Operating Procedures
• Trainings
• Assisting as per requirement in registration of other Tissue Banks.

Source: The Hindu & Notto.Gov.in