Regional Organ and Tissue Donation Registry: An Alternative to Countries Lacking National Donation Registry

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Abstract

Introduction

Increasing the number of donors and shortening the waiting time for transplant are major challenges to our community. Strategies to achieve these goals may include general public awareness campaigns and the use of National Donation Registries. This latter modality has been successfully adopted throughout the world since 1978, when Israel reported its first results.

Introduction

When Brazil created its National Transplant Organization (SNT) in 1997, drivers’ licenses and/or Identification Cards were utilized to express citizens’ choice about organ and tissue donation. Designed as a referendum form of “yes” or “no” answers, under an opting out system, it resulted in major denial for donation (majority opting “no”), due to lack of general public information. Further legislation modifications were adopted 2 years later. Thus, first consent authorization through a National Donation Registry has so far not been possible in Brazil, where authorization for organ and tissue donation is still based on family authorization.

Introduction

Rio de Janeiro State has started major changes in its Organ Procurement Organization (Programa Estadual de Transplantes – PET) starting is 2010. After benchmarking results from Donate Life Program in the USA, PET created in 2015 the first regional organ and tissue donation registry in Brazil.

Methods

PET organized seminars, visits to business organizations and presentations at schools, and general hospitals, aiming to reach the largest number possible of people desiring to express their willing to donate. During these events, people were invited to register their will at the website www.doemaisvida.com.br. Confidentiality of data is warranted by PET following international standards. Registered donors received a donation card and data became accessible to PET, starting on April 2015.

Results

Registrations started on April 24th, 2015 and data collected until December 31st, 2016 are presented in the picture:

Results

During this period we organized 41 business presentations and 20 general public events, reaching around 1713 registries. In this 16-month period we collected 2969 first consent authorizations.

Conclusions

Considering the Rio de Janeiro 16 million population, our initiative reached only a small number of people. Our results show, however, that regional donation registries may be a valuable tool to increase the number of factual donors. Although limited by legal restrictions, the success of an on-line regional registry combined with educational and management actions may encourage a growing number of people to manifest their consent donation and improve consent rate. We hope that this initiative will motivate the implementation of a National Donation Registry.

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