Improving the Use of Patient Registries for Comparative Effectiveness [Methods Study], Boston, Massachusetts, 2013-2018

Researchers can use data from patient registries to look at which medicines or other treatments work best. Registries store data about people with a specific health problem. The data may include the health care and medicines patients receive over time and patient reports of their health status.
To find out patients' health status, registries ask patients to fill out surveys at different times during treatment. Researchers can compare survey results from when patients first take the survey with results from surveys taken after treatment. They can then find out how well a medicine works. But patients may not always take the first survey before they start a new medicine. Sometimes, they don't take the first survey until after starting treatment. When this happens, it is hard to know how well the medicine works.
In this study, the research team looked at different ways to use data from patient surveys in registries. The team wanted to learn which way would give the most accurate understanding of the effects of a new medicine. The study also looked at patients' views on taking part in registries.