Building a rare disease registry
Patient registries are centralised databases that collect medical information about patients with a particular condition or group of conditions. Patient registries are often particularly valuable for rare diseases.
This course will explain what a patient registry is, how they can be used and why they are valuable to patient groups.
With thanks to:
Costello Medical provided pro-bono support in the updating of this course.
Resource type
Course
Skill level
Advanced
Duration
Est. 2 hours
Last updated
October 2019
Resource type
Course/Video Guide/Webinar/Event Recording/Guide
Skill level
Beginner/Intermediate/Advanced/Expert
Duration
Est. X hours
Last updated
Month Year
What will you learn?
- How to use a patient registry and apply the data contained within it
- The steps involved in setting up a patient registry
- The important considerations for maintaining a registry
- The imapact a registry can have
Who is this course for?
This course is designed for patient groups looking to set up a patient registry to help them progress towards their goals. These may include:
- Collecting data on disease impact
- Drug development
- Securing access to treatments
- Understanding the patient population better
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Resource Content
Introduction to registries
Finding existing registries
Steps to building a patient registry
Extra Resources