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UK Oncology Trial Patient Feedback Not Being Included into the Record: Patient Engagement Now!

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The University of Birmingham and Macmillan Cancer Support urge researchers to use newly developed guidelines so factoring in all material data into published materials so that patients can be fully informed about how cancer drugs affect quality of life.

What happened? Apparently, up to 49,000 cancer patients’ feedback from clinical trials from 2000-2014 were not included in published material and in fact remains unpublished!  Published in the Journal of the National Cancer Institute, the findings reveal patient feedback collected in Patient Reported Outcomes (PRO) has been systematically ignored.  Data in regard to how a clinical trial impacted or affected a patient’s quality of life provides crucial insight into what a patient’s life may be life if they opt to take the treatment.

The researchers reported investigators and sponsors gladly publish survival or cancer progression data, over one third of studies don’t include PRO data from patients. The Macmillan Cancer Support and the University of Birmingham call on researchers to use the new international guidelines called SPIRIT-PRO2, developed by a team led by the University, to help ensure vital patient-reported data is available from all trials to assist with life changing treatment discussions between cancer patients and clinicians.

Lead Research/Investigators

Dr. Rosie Loftus, Chief Medical Officer, Macmillan Cancer Support

Dr. Derek Kyte, University of Birmingham

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