Disease Registries 101…is that when two diseases get married and pick out house wares?
The term registry conjures different meanings to different groups. Couples use a registry when marrying. Hotels have registries of guests. And so do hospitals. There are also donor and recipient registries for hearts, kidneys, bone marrow transplants, etc. The thing these all have in common is each registry is a record of some sort containing data that are useful.
In medicine, researchers eat, breathe, and sleep data. And depending on the organization, these data could be housed all in one place, or (like in most cases) data could reside in a multitude of spreadsheets, on different computers, or in one or more homegrown databases serving as rudimentary storage.
Leap forward to today…with real “registries” for medical research available, and there is change in the air that is almost palpable. The gains to be had by accessing all data, and sharing it among multiple entities in many cases, are outweighing former norms of guarding data until the death (literally in many cases). Data was the lifeblood which sustained activity, so it was an understandable attitude. However, now technology to bring data together, share it, and research it with powerful tools doesn’t require the Pentagon’s budget. This is great in the case of rare diseases which inherently are underfunded by said government.
The lesson, thus, is when you hear the word “registry”, think of a better way of storing and amassing (a.k.a., “aggregating”) research data that is easier to share as desired, harmonized to omit inconsistencies in terminologies or units, and at researchers’ fingertips to query using more powerful tools than ever to yield 360-degree views at the patient and disease level to accelerate breakthroughs.
Dr. Chad Malone, Chief Medical Officer