Data DIY: The Why’s and How’s of Data Collection

This is a hopeful time for the rare disease community. Our understanding of the causes of rare diseases is rapidly growing, along with the development of innovative approaches to treatment.
The ability to collect and share data is at the heart of these advances. That’s why patients and advocacy groups are taking on the task of collecting, combining and sharing data themselves.

In this module, you will learn how you can play a part in this revolution in care. By the end of this module you will able to: Understand why health data is valuable, who owns it, and how it is used, create a plan to assemble and share your health data to benefit your family and community, and learn about types of data collection programs, including contact registries, patient registries, natural history studies and biosample repositories.

Cost: Free
Instruction Type: Self-Paced
Certificate: Yes

Thank you to our content developers!

Scott Demarest, MD Assistant Professor Dept. of Pediatrics and Neurology CU School of Medicine & Children’s Hospital Colorado
Liz Horn, PhD, MBI Principal LHC Biosolutions
Megan O’Boyle Principal Investigator International Registry & Data Network Phelan- McDermid Syndrome Foundation
Ethan Perlstein, PhD CEO Perlara PBC
Steven Roberds, PhD CSO Tuberous Sclerosis Alliance                                                                                                               
Kari Rosbeck CEO Tuberous Sclerosis Alliance
Luke Rosen Founder KIF1A.Org