GLOBAL DATABASE ON DONATION AND TRANSPLANTATION: GOALS, METHODS AND CRITICAL ISSUES (www.transplant-observatory.org) Authors: Beatriz Mahillo. Medical Unit. Organización Nacional de Trasplantes Mar Carmona. Technical Unit. Organización Nacional de Trasplantes Marina Álvarez. Technical Unit. Organización Nacional de Trasplantes Luc Noel. Department for Health Systems Policies and Workforce. CPR/HPW/HSS. World Health Organization Rafael Matesanz. Medical Unit. Organización Nacional de Trasplantes Address for Correspondence: Beatriz Mahillo Duran Organizacion Nacional de Trasplantes C/ Sinesio Delgado 6-8. 28029 Madrid. Spain Fax: (+34) 902 300 226. Telephone: (+34) 902 300 224. e-mail: [email protected]
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GLOBAL DATABASE ON DONATION AND TRANSPLANTATION:
GOALS, METHODS AND CRITICAL ISSUES (www.transplant-observatory.org)
Authors:
Beatriz Mahillo. Medical Unit. Organización Nacional de Trasplantes
Mar Carmona. Technical Unit. Organización Nacional de Trasplantes
Marina Álvarez. Technical Unit. Organización Nacional de Trasplantes
Luc Noel. Department for Health Systems Policies and Workforce. CPR/HPW/HSS. World Health Organization
Rafael Matesanz. Medical Unit. Organización Nacional de Trasplantes
Table 1. Main items of the Global Database Questionnaire
Organizational System
Official body or specific organization responsible for overseeing and coordination donation and transplantation activities about organs, tissues and cells. Activities, report and funding of this organization.
National Technical Committees / Advisory Boards or Ethical Committees dedicated to donation and transplantation activities.
Surveillance system and reporting of adverse events in the process of transplantation, reactions and untoward consequences in organ transplant recipients. Surveillance system of donation complications in live organ donors.
Registries for the collection and analysis of data on donation and transplantation activities.
National / provincial standards or written instructions or guidance for transplants from deceased or living donors.
National training programs to harmonize practices for staff involved in organ procurement and transplantation.
Legislative System
Specific legislation for donation and transplantation activities.
Role of the National Health Authorities in the regulation and oversight of the donation and transplantation activities, included authorization and licence for transplantation.
Legal requirements for quality, efficacy and safety of the donation and transplantation procedures.
Legal requirement for consent to donation from deceased and living donors.
Legal requirements and restrictions for living donation.
Penalties in the event of commerce with donated organs, cells and tissues. Explicit prohibition of organ trafficking in the legal framework.
Distribution and allocation criteria for organs, tissues and cells.
Confidentiality and traceability specified by law.
Import and export of organs, cells and tissues controlled by law.
Activity data
Number of transplantation centers.
Organ donation activity.
Organ transplantation activity (kidney, liver, heart, lung, pancreas, small bowel, multivisceral).
Donation and transplantation activity on tissues and cells.
Figure 1. GLOBAL DATABASE ON DONATION AND TRANSPLANTATION: KEY
STEPS
Working group/ Network
- ONT/WHO working group: creation and distribution of tasks
- Network of focal points:
a. identification of official focal points
b. regular communication
c. keep contacts updated
Questionnaire
- Design of the ad hoc questionnnaire
- Distribution
- Improvements:
a. User’s guide
b. Glossary of terms
c. New questionnaire
Database
- Conversion of the answers into variables (codification)
- Creation of the software
- Import of the Newsletter Transplant database
- Annual Data entry
- Annual Report
Website
- Design and development of the GODT website including:
a. Information readily available
b. Maintenance and continuous improvement
c.Upgrading to higher versions
Figure 2. WORKFLOW FOR THE ANNUAL COLLECTION OF ACTIVITY DATA
Data collection
• Ad hoc questionnaire sent by E-mail to the national focal points
• Reminders (e-mail)
• Reception of data
• Deadlines: every year in Q3/Q4
Data management
• Revision of data and clarification whenever discrepancies are found (by E-mail or phone) • Data entry in the database • Validation, data check and final approval by Member States
Data analysis
• Calculation of indicators on donation and transplantation (country, regional and global estimates).
• Further analysis.
• Charts and official maps
Publication
• Publication in the GODT website
• Presentations / Other
Figure 3. DISTRIBUTION OF GLOBAL ORGANS TRANSPLANTED IN 2010