Scan of Pheochromocytoma Paraganglioma Experiences, SCOPPE, is a first-of-its-kind survey shared in the Summer of 2021. Over 270 patients responded over six weeks. Responses were solicited through social media, website and email channels. The goal of the survey is to explore the patient voice to verify, educate, explore connections and strategically guide the Pheo Para Alliance with the intention of improving clinical care and influencing future research interests.
Some initial findings can be found in the video here and more detailed information can be found on this webpage. Thank you to everyone who participated in the survey and special thanks to our dedicated committee.