The INCA Boot Camp September session was dedicated to better understanding of patient reported outcomes (PROs) – how to measure, choose and use them properly. Conversely to standard measures of clinical effectiveness, like symptoms, morbidity and mortality, patient reported outcomes give unique insights into how a therapy affects a patient, their quality of life, satisfaction with the treatment and daily activity. Jan Geissler, Patvocates/EUPATI, spoke at length about the instrumental significance of patient advocates’ involvement in the choice and use of the different PROs metrics in any clinical trial to make sure that meaningful and efficient trials are designed.
For more general information on PROs, you can watch this intro here
For NETs & PROs we recommended reading Measuring Quality of Life Among Patients With Neuroendocrine Tumors
The Boot Camp for Research Patient Advocates managed by the INCA Research Committee is a 9-month online training program (June 2020-February 2021) for NET patient advocates representing member organizations of INCA.
The program aims to educate leading NET patient advocates, who would further share their knowledge in their local communities.