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.

Resource type

Course

Skill level

Advanced

Duration

Est. 2 hours

• How to use a patient registry and apply the data contained within it

• The steps involved in setting up a patient registry

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