Last week, we posted Part 1 of a two-part conversation with Jennifer Gorzelany, advisor to biotech company Lotus Tissue Repair, which developed the EBCare Registry in collaboration with DebRA of America, DEBRA International and EB experts. Gorzelany shared information about the background of EBCare and dispelled myths about the Registry. Now she takes us through the steps of registering and discusses long-term goals.
EB Resource (EBR): What kind of feedback have you received about the Registry so far?
Jennifer Gorzelany (Jennifer): The feedback we have received so far has been very positive. Patients are eager to help doctors and researchers learn more about EB, and they want to play an active role in improving EB care and finding new treatments.
EBR: How many individuals or families are currently enrolled in the Registry?
Jennifer: As of Nov. 15, 2012, we have 375 patients enrolled in the Registry.
EBR: And what percentage of the EB population has the EBCare Registry been able to capture so far?
Jennifer: The number of patients in the Registry so far is 375, with 226 of these located in the U.S. It is estimated that there are about 15,000 EB patients in the U.S.; therefore, about 1.5% of U.S. EB patients are currently enrolled in the Registry.
EBR: So how does it work? What are the steps to getting registered on the EBCare Registry?
Jennifer: Patients or their caregivers can go to the Registry website at www.ebcare.org. Once at the site, they can read more about the Registry and enroll by clicking on the “Register Now!” button. Completing all of the Registry questions takes about 30-40 minutes, but it does not have to be finished in a single session. Patients or their caregivers can create an account and enter their diagnosis in just a few minutes. Once an account is created, they can log back in over a series of days or weeks to complete the questions. If patients have trouble answering any of the Registry questions, they can request assistance from an EBCare Coordinator. The coordinator’s contact information is on the EBCare website.
EBR: Has the team behind the EBCare Registry established a timeline for getting the Registry as complete as possible, and if so, what are their goals?
Jennifer: The Registry will continue to enroll patients indefinitely, but the more data we can collect, the better we can understand each form of EB. It would be excellent, for example, if we had 500 or more patients enrolled for each type of EB. With such a large amount of information from so many patients, we would be able to study the data and gain insight that might even lead to publishing new findings in scientific journals. Our goal is to be as successful as the registries for other rare diseases like cystic fibrosis (CF), which has enrolled over 80% of the CF patients in the U.S.
EBR: 2013 is here. What will the EBCare Registry team be focused on during this new year?
Jennifer: We are working on translating the Registry into other languages, beginning with Spanish and Japanese. We are also working on developing Registry reports that summarize the key information we have learned about the patients in the Registry. These reports will be shared with the EB community. And finally, we will continue to support DebRA of America and DEBRA International’s efforts to educate patients about the importance of the Registry. We thank you so much for giving us the opportunity to talk to your readers about the EBCare Registry. Our sincerest thanks go out to all of the patients that have participated in the Registry so far. We are off to a great start and we look forward to more patients joining in 2013 and beyond!