November 29, 2022
The Know AML team hosted a Global Network Meeting on Monday, November 21, bringing together patient advocates, patients, and healthcare professionals to discuss the important topic of clinical trials within acute myeloid leukemia.
This 90-minute educational meeting designed to support knowledge increase among Know AML members and the wider community featured two guest speakers, who both gave sessions on participating in clinical trials, but from different perspectives.
The expert-led session hosted by Dr Karen-Sue Carlson, Medical College of Wisconsin, Milwaukee, US, covered the question of “What is it like to participate in a clinical trial?” Dr Carlson presented an overview of what clinical trials are and why they are important, before moving on to outline what is involved in participating in a clinical trial. Dr Carlson approached the important topic of what patients should consider when deciding to participate in a clinical trial and also provided information on where patients and caregivers can find out more information about clinical trials, including location and eligibility. The final section of Dr Carlson’s session focused on how clinical trials can help to improve patient care and how organizations can collaborate to support this.
The second session was patient-led by Ralph Hills, who focused on the “Experience of participating in a clinical trial.” Ralph presented his own journey with acute myeloid leukemia, including the diagnosis, initial prognosis, and treatment options, and how and where Ralph found out about the clinical trial he ultimately took part in. He spoke about the options that were available to him and the decision-making throughout the journey for Ralph, his wife and main caregiver, Dorcas, and their family. Ralph also gave an insight into his life since the clinical trial, including some of the people who have heard Ralph’s story and when Ralph received his first standing ovation!
Following the sessions, we had positive feedback from attendees, and we are currently working on developing the recordings into enduring educational content to be housed on the Know AML website.
These meetings are a chance to continue building healthcare professional and patient networks that facilitate open access, science-driven, unbiased disease education, and awareness. If you would like more information about these meetings or any of our programs, please see our website or contact us.
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