Resources
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A Rare Disease Registry Roadmap:
A Patient-Centric Approach
If you are developing medicines for rare diseases, you are probably aware of the need for rare disease registries (RDRs). The purpose of this short e-book is to share some of my experiences in planning, designing, and executing RDRs. RDRs are vital tools, designed to collect, store, and manage data about patients affected by rare diseases. These registries serve multiple purposes, including facilitating research through collection of real-world data, improving patient care, and enhancing our understanding of these diseases.
The content for this e-book is compiled through my professional experience working in rare diseases. More importantly, through interactions with colleagues and experts I learned about the many challenges that registry organizers experience across the globe. I think I learned more during these interactions and the subsequent discussions than any other experience. This e-book is a starting point, a first step on the journey toward developing successful and productive RDRs that will ultimately lead to discovery and understanding to improve the lives of people with rare diseases.
You’ll learn…
Why RDRs are necessary.
Different types of registries and their use.
Determining a registry’s aims and how to meet them.
The scope of registries and registry governance.
Creating sustainable registries.
The future of RDR’s, especially in light of rapidly advancing technology and AI.
And you’ll get valuable tools for planning your registry:
A practical roadmap for creating an RDR.
A quick resource check list.