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Patient Registries: Design, Development, and Recruitment
Session Chair(s)
Ginger A Spitzer, MA
Executive Director
Foundation of Sarcoidosis Research, United States
This workshop will review how to create a patient registry, outlining major elements. Participants will work together and with the presenter to identify specific needs (based on resources, objectives) and review options and recommendations.
**Due to workshop format, seating will be limited and will be available on a first come, first served basis.
The Walter E. Washington Convention Center has stringent regulations on maximum room capacities, and they are strictly enforced. Once all seats are occupied, DIA will be required to close the workshop, and no more participants will be admitted. Interested attendees are encouraged to arrive at workshops early in order to ensure seating. Please note, as a workshop with interactivity, this offering will not be recorded.
Learning Objective : Discuss the benefits that basic types of patient registries offers to research; Describe a model for developing a patient self-reported registry including the steps and resources needed; Explain the critical need for big data including how grassroots, medium size, and large patient engagement groups/organizations can be a resource to provide data on rare diseases.
Speaker(s)
Facilitator
Marc Foster, MBA
Transparency Life Sciences, Inc., United States
COO