The CCM Scientific Workshop provided an ideal opportunity to present the International Cavernous Angioma Patient Registry to the scientific community. In a short oral presentation, I described the purpose of the Registry (to be a communication tool) and how researchers can use the Registry to distribute study announcements throughout the patient community. Currently, the ‘News’ section of the Registry has information posted about four studies that are currently recruiting patients.
The Registry project was well received by scientists in the group – some offered suggestions for additional questions to ask in the survey questionnaire. In the coming months, the registry will continue to grow and evolve to include additional questions. Therefore, please be on the lookout for email reminders to update your account and respond to any new questions.
Additionally, as a reminder, Registry participants can use the ‘Explore’ section of the website to view the compiled data from each of the survey questions. Some interesting results are shown below:
As of October 2010, the Registry has 191 registered participants residing in 9 different countries. The geographic distribution of participants is show in the following graph.
Additionally, age of onset for Cavernous Angioma symptoms is highly variable between participants.
The success of the Patient Registry is contingent upon your participation. If you are interested in participating in a future research project, please visit the website and consider signing up for the Registry. Creating a registry profile does not obligate you participate in any particular study, instead it will aid in communication between you and the research community. Remember, patients and patient families are an integral ingredient to the research process; without you, there can be no cure!