Information to be included in National Registry regarding donors and recipients of human organ and tissue.

The national registry shall be based on the following, namely:- Organ Transplant Registry: (1) The Organ Transplant Registry shall include demographic data about the patient, donor, hospitals, recipient and donor follow up details, transplant waiting list, etc., and the data shall be collected from all retrieval and transplant centers. (2) Data collection frequency, etc., will be as per the norms decided by the Advisory Committee which may preferably be through a web-based interface or paper submission and the information shall be maintained both specific organ wise and also in a consolidated format. (3) The hospital or Institution shall update its website regularly in respect of the total number of the transplantations done in that hospital or institution along with reasonable detail of each transplantation and the same data should be accessible for compilation, analysis and further use by authorised persons of respective State Governments and Central Government. (4) Yearly reports shall be published and also shared with the contributing units and other stakeholders and key events (new patients, deaths and transplants) shall be notified as soon as they occur in the hospital and this information shall be sent to the respective networking organisation, at least monthly. Organ Donation Registry: (5) The Organ Donation Registry shall include demographic information on donor (both living and deceased), hospital, height and weight, occupation, primary cause of death in case of deceased donor, associated medical illnesses, relevant laboratory tests, donor maintenance details, driving license or any other document of pledging donation, donation requested by whom, transplant coordinator, organs or tissue retrieved, outcome of donated organ or tissue, details of recipient, etc. Tissue Registry: (6) The Tissue Registry shall include demographic information on the tissue donor, site of tissue retrieval or donation, primary cause of death in case of deceased donor, donor maintenance details in case of brain stem dead donor, associated medical illnesses, relevant laboratory tests, driving license or any other document pledging donation, donation requested by whom, identity of counsellors, tissue(s) or organ(s) retrieved, demographic data about the tissue recipient, hospital conducting transplantation, transplant waiting list and priority list for critical patients, if these exist, indication(s) for transplant, outcome of transplanted tissue, etc. (7) Yearly reports in respect of National Registry shall be published and also shared with the contributing units and other stakeholders. Pledge for organ or tissue donation after death: (8) Those persons, who, during their lifetime have pledged to donate their organ(s) or tissue(s) after their death, shall in Form 7 deposit it in paper or electronic mode to the respective networking organisation(s) or institution where the pledge is made, who shall forward the same with the respective networking organisation and the pledger has the option to withdraw the pledge through intimation. (9) The Registry will be accessible on-line through dedicated website and shall be in conformation to globally maintained registry (ies), besides having national, regional and State level specificities. (10) National or regional registry shall be compiled based on similar registries at State level. (11) The identity of the people in the database shall not be put in public domain and measures shall be taken to ensure security of all collected information. (12) The information to be included shall be updated as per prevalent global practices from time to time.