Cure Mito patient registry director, Sophia Zilber, gave a presentation at our patient registry partner, Sanford Research conference, on the topic of, “Data Management and Analysis – Example from Leigh Disease Global Patient Registry”.
We hope it’ll be useful to many others in rare disease community.
Some points covered:
1) Importance of keeping the goal (high quality data) in mind from the early stages
2) Data dictionary/data format
3) Survey – features that can lead to data issues
4) Why starting data analysis early is important
5) Checking your results
6) Combining data from different registries
7) Transparency
8) Sharing results
Please view slides here
Please watch presentation here
