Current Status
Not Enrolled
Get Started

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 logo

Costello Medical provided pro-bono support in the updating of this course. 

Resource type


Skill level



Est. 2 hours

Last updated

October 2019

Resource type

Course/Video Guide/Webinar/Event Recording/Guide

Skill level



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