Engaging People with Epilepsy in Collaborative, Patient-Centered Research Dario Dieguez, Jr.1, Dale Hesdorffer2, Barbara L. Kroner3, and Janice M. Buelow1 1 Epilepsy Foundation, Landover MD; 2Columbia University, New York, NY; 3RTI International, Research Triangle Park, NC 1. Introduction 4. Results 4. Results 4. Results (continued) 84% of caregiver respondents are of White race, 8 % are mixed, 2% are African- American, 2% are Asian, and 1% are Other; 75% of self-responders are of White race, 2% are mixed, 2% are Asian, 1% are Native American/Indian, and 1% are Other. The Rare Epilepsy Network (REN) is a collaborative research effort focused on the needs of patients with rare epilepsies and their caregivers. Specifically, REN is a registry of medical- and quality of life self-reported data from rare epilepsy patients or their caregivers. The self-reported information acquired via the REN survey includes demographics, epilepsy diagnosis, seizure features, medications, surgeries, and co-morbidities. Here, we describe our strategies to engage rare epilepsy patients and their caregivers in REN’s research efforts. To date, all 22 rare epilepsy organizations continue to be actively involved in the research process and in decision-making for all of REN’s research efforts. The REN currently collaborating with the following 22 patient advocacy groups (listed alphabetically): Aaron’s Ohtahara Aicardi Syndrome Foundation Bridge the Gap SYNGAP Carson Harris Foundation International Foundation for CDKL5 Research Doose Syndrome Epilepsy Alliance Dravet Syndrome Foundation Dup15q Alliance Hope for Hypothalamic Hamartomas Infantile Spasms Community Jack Pribaz Foundation KCNQ2 Cure Alliance Lennox-Gastaut Syndrome Foundation PCDH19 Alliance Phelan-McDermid Syndrome Foundation RASopathies Network International Rett Syndrome Foundation Ring 14 USA Outreach Ring 20 Chromosome Alliance TESS Foundation Tuberous Sclerosis Alliance Wishes for Elliott Ongoing patient engagement efforts include recruitment via the following: Emails Internet postings Personal communications Social media (including Facebook, Twitter, and YouTube) Fundraising walks Family or professional conferences REN’s novel social media strategies to recruit new participants include: International Epilepsy Day hashtag and pictures (in conjunction with the International League Against Epilepsy). A Valentine’s Day appeal to “register someone you love” for the REN. Patient Ambassador Program recruitment videos on YouTube. A month-long series of drawings for Amazon gift cards (for those who have completed all of the REN modules). REN in the process of developing the following: Creation of a Medical/Clinical Advisory Board composed of epilepsy clinicians to advise REN on clinical research activities. Creation of a web portal intended to disseminate preliminary REN-generated data for the lay public. An official process by which outside investigators can apply, be reviewed, and possibly gain access to REN-generated data for their own independent analyses. REN enrollment as of November 4, 2015: Current enrollment is N= 755 for caregivers and N = 67 for self-responders. 93% caregiver-entered data; 7% patient-entered data. 50% of caregiver respondents are female and 46% are male; 52% of self- responders are female and 36% are male. 87% of caregiver respondents are of non-Hispanic ethnicity and 10% are Hispanic; 75% of self-responders are of non-Hispanic ethnicity and 4% are Hispanic. REN’s efforts in engaging rare epilepsy patients and their families in REN’s research and governance have been successful. Participation in REN may facilitate the ability of rare epilepsy patients/caregivers to be more empowered and informed in their health decision-making process. The synergy provided by REN’s efforts has the potential to increase research efficiency, enhance the quality and effectiveness of personalized medical care, and ultimately facilitate faster translation of research findings from bench to bedside. 5. Discussion 2. Purpose The primary purpose of the REN is to increase opportunities for rare epilepsy patients and their caregivers to participate in research that is both patient-centered and patient-driven. A secondary purpose of the REN is to engage these stakeholders in the research process, including identification of research questions and study conceptualization. The REN is expected to facilitate observational studies, comparative effectiveness research, and clinical trials. The REN Steering Committee (SC) and Executive Committee (EC) constitute REN’s decision-making body. The EC is the liaison between the REN as a whole and the funding organization, the Patient-Centered Outcomes Research Institute (PCORI). The EC is composed of three Co-Principal Investigators and one additional member that is also present on the SC. The SC is much larger and includes at least one representative from each of the 22 rare epilepsy patient advocacy organizations REN is currently collaborating with. All of REN’s research efforts are guided by input from the 22 collaborating patient organizations that make up the REN, all of whom participate in the SC, workgroups, and PCORI Task Forces and most of whom are caregivers or a family member of someone affected by a rare epilepsy. REN’s governance and patient engagement efforts are designed to excite affected persons and their caregivers in the research process. Patient engagement strategies include building a Patient Ambassador Program (PAP) designed to encourage those in the community to assist in recruitment and retention of eligible human subjects and to have a voice in REN’s research activities. PAP members, typically nominated by a REN SC member, received a PAP Guide, which contains information about strategies for recruitment, as well as materials for dissemination in the community. PAP members are also asked to create a short video intended to help recruit new REN participants, which the Epilepsy Foundation disseminates via enewsletters and posts on its social medial channels. Eligible participants can read about eligibility criteria and register for the REN at https://ren.rti.org. The RTI International IRB approved all protocols. 3. Study Methods References Reference text reference text reference text reference text reference text reference text reference text reference text reference text reference text reference text reference text reference text reference text reference text reference text reference text . Contact Information *Presenting author: you For further information: RTI International, rest of address Phone: 000-000-0000 • Fax: 000-000-0000 • Email: you@rti.org Presented at: your conference RTI International is a trade name of Research Triangle Institute.