What can patients expect when joining a clinical trial?

Know ALL was pleased to speak with Lizzie Dean, a patient with acute myeloid leukemia (AML) and patient ambassador for Know AML, and Hayley Ellis, senior hematology research nurse, Queen Elizabeth Hospital, Birmingham, UK. They discussed: “What can patients expect when joining a clinical trial?”

Lizzie shares her experiences of participating in two clinical trials: when she was newly diagnosed with acute leukemia (in her case AML) and then again following two relapses. She discusses how she joined the trials, her experiences of attending hospital appointments and treatment side effects, and what her key concerns and questions were through the process.

Hayley provides information on where patients can find information about participating in clinical trials if they are interested in taking part; for example, by discussing with a healthcare professional, contacting cancer charities, or registering with organizations online. She also explains how research nurses and other healthcare professionals can support patients through their treatment and clinical trial journey following diagnosis and gives an overview of how clinical trials might be conducted. For example, the HOVON Foundation has established a network of clinical trials and treatment centers, to advance research in the field of hematologic disease and to expand access to clinical trials for patients across Europe and the UK.¹

Hayley and Lizzie also provide their key advice for patients considering enrolling in a clinical trial, encouraging patients to fully familiarize themselves with any patient information materials provided by healthcare professionals and undertake their own further research online. They highlight the importance of asking their team of healthcare professionals any questions they might have, so that they can make an informed choice about enrolling in a trial and be fully supported throughout the process.

This educational resource is independently supported by Syndax. All content was developed by SES in collaboration with an expert steering committee. Funders were allowed no influence on the content of this resource.

References

1. Hovon. About Hovon. https://hovon.nl/en/about-hovon (https://hovon.nl/en/about-hovon). Accessed September 29, 2025.