• Join Today!

Become a member and connect with:

  • An Active Online Community
  • Articles and Advice on SCD
  • Help Understanding Clinical Trials
patient education

Clinical Data Registry

key information

source: PCPI Foundation


What is a clinical data registry?

A clinical data registry records information about the health status of patients and the health care they receive over varying periods of time. Clinical data registries typically focus on patients who share a common reason for needing health care.

They allow health care professionals and others to see what treatments are available, and how patients with different characteristics respond to various treatments. This information can be used to inform patients and their health care professionals as they decide the best course of treatment and to improve care for patients in the future. Information from registries may also be used to compare the performance of healthcare providers with regard to their outcomes and resource use.


How does a clinical data registry work?

There are many types of clinical data registries including those that focus on a disease or condition (e.g., cystic fibrosis), a procedure (e.g., coronary artery bypass grafting surgery) or to track the performance of a device (e.g. artificial joint).  A clinical data registry begins by defining a patient population, and then recruits health care professionals who will submit data on a representative sample of these patients.


read more

expertly curated content related to this topic