CONTEXT:  Early days in this incredibly worth while endeavour to use the newly emerging AI/ML tools to process patient data into research grade data.  Created within this cholangiocarcinoma (bile duct cancer) patient advocacy group, the methods being developed here can change patient data into valuable RWD for further research.  IMPACT:  High READ TIME:  2 mins Quality Level Mean [1 – 10]:  8 1. “Partnerships are essential to Ciitizen—the relationships with groups such as the Cholangiocarcinoma Foundation, Morehouse School of Medicine, and the Male Breast Cancer Coalition allow the platform to reach patients with rare and understudied cancers, as well as groups who are not well-represented in clinical trials.”  2. “On the first day of the Cholangiocarcinoma Foundation Annual Meeting, Elli Brimble, MS, MSc, Ciitizen’s head of Clinical Operations, offered insights from Map It Forward, an ongoing study based on data provided by patients with cholangiocarcinoma.”  3. “Ciitizens maintains patient data extracted from medical records, and users can consent to have deidentified records used for research, Brimble said.”  4. “Then, Ciitizen creates profiles on each participant that allows the research to identify which ones have no information on oncogenomic testing.”  5. ““By exploring real-world oncogenomic testing patterns, we’ve identified high diagnostic yields for actionable findings in our population,” Brimble said.”  Source URL: https://www.ajmc.com/view/patient-driven-platform-offers-real-world-insights-into-cholangiocarcinoma