Registries for All Webinar Series
Webinar Series

Registries for All (Reg4ALL) is an innovative new registry platform that aims to accelerate research and improve health for all. Reg4ALL users begin by answering simple and engaging questions about their health, and then set specific privacy settings that reflect exactly how comfortable they are with sharing that information. Two exciting features make Reg4ALL unique. First, users can share as much or as little as they want with as many or as few people and institutions as they want – better still, their sharing preferences can be changed as frequently and quickly as their health or feelings about privacy change. Second, Reg4ALL users can set preferences that allow researchers or disease advocacy organizations to reach out to them with news about clinical trials or new programs. With this distinctive feature, Reg4ALL allows users a new type of control over their health data and future, provides researchers with an easier, faster system to recruit for medical research, and gives advocacy organizations more tools to grow and thrive.
Find out how Reg4ALL works – and how to make it work for you – with the Genetic Alliance webinar series. The webinars will be occur every other week from early May to early August, and will take place at 12pm EST. All webinars are free of charge and are also archived for later viewing. In general, the webinars will last one hour, including ample time for questions.
What is Reg4ALL? (May 1): The basics: How to make an account, control sharing settings, interact with researchers. PowerPoint Presentation | Webinar Recording
What is a registry? What is a biobank? (May 16):Nuts and bolts on registries and biobanks. What are they good for? PowerPoint Presentation | Webinar Recording
Reg4ALL and Disease Advocacy Organizations (May 29): Learn how advocacy organizations can create and manage their own registries. PowerPoint Presentation | Webinar Recording
Reg4ALL and Researchers (June 26): Learn how Reg4ALL, and its powerful search engine RecruitSource, provides an easier, faster way to recruit patients to clinical trials. Webinar Recording
Reg4ALL and Individuals (July 10): Find out how individuals can use Reg4ALL to store information, connect with research and advocacy groups, and control their health in a new way. Webinar Recording
Genetic Alliance Rare Disease & Genetic Conditions Support Community on Inspire (August 8): Discover Genetic Alliance Rare Disease & Genetic Conditions Support Community. It connects patients, families, friends and caregivers for support and inspiration. Webinar Recording.
Genetic Alliance Registry and BioBank Now! (August 21): Genetic Alliance Registry and BioBank (GARB) began in 2003 and has evolved over the years. Some of the unique aspects of GARB are its lack of commercial interests and continual improvements in response to the needs of its members. Recent changes include drastic cost reductions and enhanced features in both registries and biobanking. In this webinar, we will present the various features and discuss how each can be used to enhance your organization's outreach and research efforts. Presentation | Webinar Recording.
