ASPO Abstracts
The HEROIC Registry: Opportunities for Collaboration
Category: Survivorship & Health Outcomes/Comparative Effectiveness Research, Survivorship & Health Outcomes/Comparative Effectiveness Research
Conference Year: 2018
Abstract Body:
Background: AliveAndKickn, whose mission is to improve the lives of individuals and families affected by Lynch Syndrome through research, education, and screening, recently introduced the HEROIC Registry. It is the first-of- its-kind patient-centric genetic database that will enable patients to take an active role in furthering Lynch syndrome research. Methods: The HEROIC Registry allows patients to contribute medical information and their experiences living with Lynch Syndrome and its associated cancers to help researchers develop new treatments, understand the various genetic mutations, write research articles, and conduct further studies and clinical trials. Ultimately, the goal of the Registry is to have aggregate data from thousands of individuals. Results: The HEROIC Registry was launched in February of 2016. Potential participants were notified about the availability of the Registry via the AliveAndKickn website, email announcements, social media promotions, conferences and awareness events, and AliveAndKickn’s clinical and institutional partners were offered the opportunity to contribute their health information. As of November 2017, 149 individuals have added their data to the Registry. Of those, 128 have a known Lynch syndrome mutation and were on average 42 years old at the time of diagnosis. 34.2% report having had a diagnosis of colorectal cancer with an average age of 42 at diagnosis; 20.6% of female respondents report having had endometrial cancer with an average age of 46 at diagnosis. 32.8% are cancer-unaffected. Additional data in the Registry include screening and surveillance behaviors, family history, and interest in participating in future research studies. Conclusions: The HEROIC Registry provides a unique opportunity for health care providers and researchers to partner directly with a patient-advocacy organization for the purposes of improving patient care in this population. It also has the benefit of including a diverse set of patients who are being seen in a variety of health care settings, which can aid in exploring research questions outside of a single institution.
Keywords: Lynch syndrome, collaboration, patient registry