The OHSU team has a new website at www.NBIAcure.org They created the site to serve as a valuable resource that is easy to use and understand. It is part of a new project called NBIAready. It has three components: long-term studies of individuals with NBIA, development of a powerful database and the development of this comprehensive website to aid families, clinicians and researchers.
The website covers a wide range of topics to provide accurate and up-to-date information about NBIA. A key feature is the "Learn" section, where you can read in-depth information about all of the NBIA disorders, common MRI findings, genetics, genetic counseling, gene testing and answers to questions often asked by patients and their families.
The site also has information about the research Dr. Hayflick's lab has done, is doing now and is planning for the future. An important goal is to use the site as a way to reach out to NBIA families around the world with information and opportunities to enroll in clinical research studies. The website’s "Register" option will allow you to join a mailing list for the topics that interest you.
Users can choose to be notified when there is new information about research studies, clinical trial opportunities, key research findings and/or upcoming events. This feature is important because several new clinical studies, including one that involves online participation from home, will soon launch at OHSU.
The site will be able to send out notifications to those who have registered for research study announcements.
This inclusive project will help the entire NBIA community be positioned to join clinical trials and other research. It will also strive to capture important data from patients or caregivers through an online system that can be used from home.
The world of research and clinical trials can be very intimidating to the average person. The Hayflick team hopes the website will help bridge the gap between scientists and NBIA families. In addition to making study recruitment easier for researchers and interested participants, it should also make the science behind those studies more understandable for all NBIA families.