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Liliana Bisigniano Argentina - Monday 28 - Data Systems and National Registries
1. Data Systems and National Registries SINTRA National Registry from Donor to Recipient the Argentine Model Liliana Bisigniano, MD Scientific-Technical Department November 27-30 2011. Buenos Aires, Argentina
2. SINTRA is the informatics system used for the management and control of activities related to the procurement and transplantation of organs, tissues and stem cells in Argentina. A project fostered, coordinated and funded by INCUCAI born in 2003 and still growing.
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4. WEB-BASED TECHNOLOGY Access through the Internet. The connection service is key. HIGH AVAILABILITY SINTRA is available 24 hours a day, 365 days a year. RELIABLE AND SAFE It was developed based on safe and robust technology: RHEL, Oracle, J2EE. Access authentication through user´s accounts and a safe session interpretation . TECHNICAL FEATURES
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6. Module 1: National registry for end-stage renal failure Module 2: Organ and tissue waiting lists Module 3: Procurement National Registry Module 4: National Registry of Transplantation and Post-Surgical Follow Up Module 5: National Registry of Donation Statement Module 6: National Registry of Bone Marrow Donors CRESI: SINTRA Report and Statistics Center MODULES
8. National registry of dialysis center National registry of patients on chronic dialysis: inclusion or reinclusion of a patient (studies, lab tests, serum tests, comorbidities, social and labor status, type of dialysis, infection risk, funds for treatment, personal information. Patient´s personal record form: includes all the information related to each patient´s dialysis ; all the centers where the patient underwent dialysis, and updated tests and personal information, as well as the present status on waiting list. Module 1: National registry for end-stage renal failure
9. National Registry of Institutions for transplant and transplant teams, tissue banks and HLA labs . Listing process 15 approved waiting lists. Staged listing. The physician indicating the transplant, the medical insurance company, the lab responsible for the immunological testing and the corresponding provincial body. . Patient´s personal record form Personal history of the patient since transplant indication, time on waiting list, transplant, and post-transplant follow up. It includes updated information of all the studies performed and personal history, as well as distribution, inclusion data and access to patient´s dialysis record (if applicable). Module 2: Organ and tissue waiting lists
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14. Since the implementation and after a big effort in terms of training in the federal setting , a high degree of compliance has been achieved among stakeholders: The results are as follows.
15. SINTRA is used for traceability throughout its processes. A clear example is the donor-recipient case as shown below: Another example is the listing process: Traceability
To aply the rules that regulated donation and transplantation activity To have a registry of all this activity To implement traceability from donor to recipient and viceversa To be a useful tool to auditing and management control To garantee transparency in all process
I am not an IT person
Individuals number of patients Information related to This module including
Information relatod to
Dialisys center that are operating in our country each phisicyan in charge on dialisys treatment has to register the information of each patien in the system by internet en real time
The system make the allocation process aplying policies that INCUCAI made
This registry also permos international searches for unrelated bone marrow donors and It is associated to Bone Marrow Donor WorldWide
Just to show the volumen of information Just to give you a snapshot about volumen of information And I am proud to announce wu haver recorded over two millon visits to SINTRA to date
To illustrated how it looks, I am going to show you some spreads sheets
We omit the name for privacy
The system authomatically make a list with an allocation priority aplying policies tha INCUCAI made