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What You Need to Know about Patient Registries for Aplastic Anemia, MDS, and PNH

Data is a vital component in healthcare and provides the ability to collect trends in diseases and disorders that can be used to make medical advances within a disease population. Patient registries are a collection of information about individuals with a specific disease or condition. These registries are used for a variety of purposes which vary from collecting and analyzing standardized information about a group of patients to offering patients and families an opportunity to connect with a patient advocacy group or organization.

During this program, recorded on September 7, 2016, Dr. Griffiths begins by discussing the significance and differences between patient registries and natural history studies and the importance of its role in rare disease communities such as aplastic anemia, MDS, or PNH. She then explains the different types of registries such as a clinical, patient reported and an administrative/contact registry and discuss the benefits of each. She concludes by mentioning current active and successful registries and natural history studies both nationally and internationally and answer frequently asked questions. 

By the end of this program, you will be able to understand:

  • The different types of registries
  • How a registry is different from a clinical trial
  • How patient data is used to improve health outcomes and why registries are needed
To download the transcript for this program:
  • Click the presentation link down below
  • Select Resources tab
  • Download PDF of transcription
This program is brought to you by Alexion Pharmaceuticals, Achillion Pharmaceuticals and Genentech