Important information about this survey

Thank you for your interest in the Public Consultation concerning the 2018 Edition of the Declaration of Istanbul on Organ Trafficking and Transplant Tourism (DoI).

Please note that this survey concerns the Commentary Paper associated with the 2018 Edition of the Declaration of Istanbul. If you wish to participate in the survey concerning the Declaration itself, please click here.

Who is conducting the Public Consultation and managing this survey?
The consultation and this survey are being conducted by a working group of the Declaration of Istanbul Custodian Group (DICG), led by DICG Co-chairs Dr Dominique Martin and Professor Elmi Muller, together with the DICG Executive Officer Ms Maryn Reyneke.

What is the purpose of the Public Consultation and this survey?
To celebrate the 10th anniversary of the DoI, which was created in 2008, a draft new edition of the DoI has been prepared by a multidisciplinary working group with 39 members. The group has reviewed the original DoI in the light of persisting and emerging issues relating to organ trafficking and transplant tourism, and made changes which are intended to ensure that the DoI offers clear guidance for health professionals and policy makers. The group has also prepared a draft Commentary Paper which provides further explanation of the principles of the DoI (2018 Edition) and discusses potential strategies for their implementation. (You can download and view the draft Commentary Paper in a pdf format here.)

The purpose of this survey is to seek feedback on the draft version of the Commentary Paper from stakeholders including members of the DICG, members of the organizations which have endorsed the DoI, and members of the broader community of organ donors, transplant recipients, health professionals, policy makers and others involved in donation and transplantation. 
We will use your feedback to make further improvements to the DoI (2018 Edition).

Who should participate in this survey?
Members of the DICG, the Transplantation Society, the International Society of Nephrology and the organizations which have endorsed the DoI are strongly encouraged to participate in the survey. All health professionals, in particular those who work in organ donation and transplantation, and health authorities and policy makers, as well as professionals and nongovernmental groups working to combat human trafficking are encouraged to participate.
We welcome feedback from patient organizations and individuals who have personal experience of organ donation or transplantation.
What are we asking you to do in this survey?
We will first ask you to provide some information about yourself, so that we can make sure we receive feedback from a wide range of stakeholders. We will then ask you to review the draft Commentary Paper and tell us what you think of the proposed text. You will also be invited to provide suggestions for improvement.

Please note that the Commentary Paper is long (approx. 10,000words) so it will take at least one hour to complete this survey. The time taken will vary according to the amount of feedback you wish to provide on particular sections.

How will your privacy be protected?
You can choose to remain anonymous when participating in this survey. If you choose to identify yourself, it is possible that we may contact you privately to ask you to clarify or expand on some of your feedback, or to ask if you would willing to be publicly identified with one of your comments. All responses will be treated as confidential.

Some of the feedback collected via this survey will be communicated publicly when the final version of the 2018 Edition of the DoI is made public in July 2018. General themes in the feedback received may be presented at professional conferences, in journal publications or in media communications from the DICG discussing the 2018 Edition. Some individual comments may be published, but any information that would identify the participant will be removed, unless we seek and obtain your permission to publish a comment that identifies you.

Please note that your participation in this survey and any feedback you provide will have no impact on your membership of the DICG, the Transplantation Society, the International Society of Nephrology or any organization that has endorsed the DoI.

How will you learn the outcomes of the Public Consultation?
After the public consultation closes, the working group will analyse the feedback received on the Commentary Paper and update the draft. The final version will be published soon after the launch of the 2018 Edition of the DoI at a workshop celebrating the 10th Anniversary of the DoI in Madrid on July 1, 2018, as part of the pre-congress program for the Transplantation Society International Congress. A report summarising the outcomes of the public consultation and presenting the 2018 Edition of the DoI and the Commentary Paper will also be published on the DoI website. All survey participants who provide a contact email address will be sent an announcement when this report is published.

Where can you get more information about the Public Consultation?
Please contact us at admin@declarationofistanbul.org if you have questions regarding participation in this survey.

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