Liliana Bisigniano Argentina - Monday 28 - Data Systems and National Registries


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  • 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
  • Liliana Bisigniano Argentina - Monday 28 - Data Systems and National Registries

    1. 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. 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.
    3. 3. Main Strategy To decentralize information management, so that all the stakeholders may interact in different processes and directly with SINTRA, and centralize information in only one solid database. <ul><li>General Aims </li></ul><ul><ul><li>Rules </li></ul></ul><ul><ul><li>Registry </li></ul></ul><ul><ul><li>Traceability </li></ul></ul><ul><ul><li>Auditing </li></ul></ul><ul><ul><li>Management Control </li></ul></ul><ul><ul><li>Transparency </li></ul></ul>
    4. 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
    5. 5. <ul><li>Own human resources, development, maintenance and management </li></ul><ul><li>Own data center including </li></ul><ul><ul><li>A redundant automated cooling system </li></ul></ul><ul><ul><li>A redundant emergency supply system </li></ul></ul><ul><ul><li>X86 architecture high availability hardware </li></ul></ul><ul><ul><li>Software platforms: RHEL, Oracle 10g, J2EE </li></ul></ul>TECHNOLOGIC AL INFRASTRUCTURE
    6. 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
    7. 7. SINTRA USERS
    8. 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. 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
    10. 10. <ul><li>National registry of donor – generating entities, procurement teams </li></ul><ul><li>and hospital transplant coordinators </li></ul><ul><ul><li>National Procurement Registry </li></ul></ul><ul><ul><li>Donation with cadaveric donors is the foundation of the National Organ and </li></ul></ul><ul><ul><li>Tissue Procurement Registry. </li></ul></ul><ul><ul><li>It starts with the detection of a Potential Donor in a health care center and </li></ul></ul><ul><ul><li>finishes with the closing of the organ and tissue allocation and distribution </li></ul></ul><ul><ul><li>process. </li></ul></ul><ul><ul><li>It includes the diagnosis of death, studies and tests of the donor, family </li></ul></ul><ul><ul><li>interview, judicial intervention, and retrieval and procurement certificates. </li></ul></ul><ul><ul><li>Allocation and distribution process </li></ul></ul><ul><ul><li>RENAL, HEPATIC, INTRATHORACIC, PANCREATIC, </li></ul></ul><ul><ul><li>RENOPANCREATIC, INTESTINAL AND CORNEAS. </li></ul></ul><ul><ul><li>Each one has its particular rules. (INCUCAI resolution) </li></ul></ul>Module 3: National Procurement Registry
    11. 11. <ul><li>National Transplant Registry </li></ul><ul><li>The graft certificate is the foundation of the National Transplant Registry. </li></ul><ul><li>Donation process with living donors </li></ul><ul><li>It starts with the physician´s indication for transplant for a patient on waiting list, and finishes with the graft implantation. It includes the pre-transplant assessment of the donor, informed consent, transplant data and retrieval and implantation certificate . </li></ul><ul><li>Post-transplant follow up </li></ul><ul><li>Each transplant generates post-transplant follow up. One is immediate, and is completed within 30 days of transplant. The other one is annual and is performed every year. It includes the recipient´s personal data, post-transplant medical coverage, lab testing, clinical status, post-transplant complications, graft status and immunosuppression scheme . </li></ul>Module 4: National Transplant Registry
    12. 12. <ul><ul><ul><li>In this registry, citizens record their donation statement, either negative or </li></ul></ul></ul><ul><ul><ul><li>positive. There are many different ways to access the registry: in civil </li></ul></ul></ul><ul><ul><ul><li>registry offices, when obtaining a national identity card, by telegram or </li></ul></ul></ul><ul><ul><ul><li>at the retrieval and implant centers, among others. </li></ul></ul></ul>Module 5: National Registry of Donation Statement Module 6: National Registry of Bone Marrow Donors <ul><ul><ul><li>This registry includes citizens willing to be HSC donors, and meet the </li></ul></ul></ul><ul><ul><ul><li>corresponding medical criteria. The National Registry of Bone Marrow Donors is managed by the INCUCAI only. </li></ul></ul></ul>
    13. 13. <ul><li>Flexible and dynamic reports in real time </li></ul><ul><ul><ul><ul><ul><li>Clic & graph: Graphs in real time </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Clic & list: Access to data in real time </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li>Organized in eight general sections </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><ul><li> </li></ul></ul></ul></ul></ul>CRESI: SINTRA Report and Statistics Center
    14. 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. 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
    16. 16. Donation Process Traceability
    17. 24. <ul><li>SINTRA is useful to </li></ul><ul><li>Arrange, control, audit tasks. </li></ul><ul><li>Facilitate management control. </li></ul><ul><li>Perform scientific or health –related tasks. </li></ul><ul><li>Make information more available for users. </li></ul><ul><li>Apply traceability in different processes. </li></ul><ul><li>Guarantee transparency. </li></ul><ul><li>Continuous Growth </li></ul><ul><ul><li>SINTRA is a long-term investment project. Since the implementation </li></ul></ul><ul><ul><li>date, back in 2003, it has grown and improved steadily. It grows </li></ul></ul><ul><ul><li>constantly and new functions are being added. The result of this </li></ul></ul><ul><ul><li>process is constant growth and expansion in different settings. </li></ul></ul>Results
    18. 25. Thanks for your attention!
    19. 26. Waiting List Traceability