The resources presented below are for registries to use to help navigate the conversation with donors around the topic of donor engagement in cell and gene therapy. 

This resource kit is a collection of advice and materials on how to run discussion groups with donors from your registries. It has been designed to explore the broad theme of cell and gene therapy (including working with external organisations, sourcing starting material from donors, cryopreservation, etc.), and touches on a range of key topics that are of interest to us as a wider community. It was designed in a collaboration between Salmah Ahmed (Anthony Nolan Registry, Chair of WMDA Cell and Gene therapy Committee (2021-2024)), Dr Ros Williams (a social science at the University of Sheffield, UK) and with advice and feedback from members of WMDA. The design was tested with pilot discussion groups with a range of donors on the Anthony Nolan registry.


We ask that you let the WMDA Cell and Gene Therapy Committee know if you’re planning to use this resource kit, and we also ask that you consider sharing a summary of your findings with Committee to help inform the continuing discussion on cell and gene therapy and our global community’s role in it. Contact via pillar 3 coordinator: eefke.vaneerden@wmda.info

What is in this resource kit?

  • Document 1: Working Document. This is a detailed overview of the content of the resource kit and why/how to use it. This guide provides an overview of the discussion group approach that will give you more information on the practicalities of facilitating this research.
  • Document 2: Discussion Group Schedule – provides a template of how to run your discussion group from start to finish, including suggestions for the questions you can ask to stimulate discussion
  • Document 3: Discussion Group Stories – discussion groups have been designed around a series of brief ‘stories’ developed by members of our community that reflect possible scenarios of use. Participants read/hear these stories, and are then invited to respond to them through a series of prompt questions
  • Document 4: Resources for Institutional Review Applications – includes parts of the text used for a completed ethical review application which was approved by The University of Sheffield University Research Ethics Committee in November 2021, for the pilot of this research. You may wish to use this text as the basis of your own application if required.
  • Document 5: Sample Text for Recruiting Participants – this suggested text can be used as a basis for your communications with donors to invite them to participate if useful.
  • Document 6: Example Participant Information and Consent Form – this template consent form can be adapted for your local research, so you can collect informed consent from participants


1: Working document:

Document




2. Discussion group schedule:

Document

3. Discussion group stories:

Document

4. Resources for institutional review applications:

Document

5. Example text for registry recruitment:

Document

6. Example participants information:

Document

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