What are Registries? | Aplastic Anemia and MDS International Foundation (AAMDSIF) Return to top.

What are Registries?

Introductory image: Patients and Doctor at Conference Interlude

In the medical field, registries are systematic collections of data related to specific diseases, conditions, or treatments. They are databases designed to gather and store detailed information about patients' medical histories, diagnostic information, treatments, outcomes, and various other factors. The primary goal of medical registries is to advance medical research, improve patient care, and enhance healthcare practices by providing comprehensive and reliable data. Medical professionals, researchers and public health experts use these registries to track and analyze patient data, outcomes, and trends to improve healthcare practices or develop new therapies.

There are different types of medical registries: patient self-reported, professional reported, and a combination of the two. In patient self-reported registries, only patients are asked to provide information generally through a publicly available website. In professional reported registries, only doctors or other clinicians provide information. These registries generally do not have a publicly available website. In combination registries, some information is provided by both patients and their doctor, and they generally have a publicly available website.

Registries often gather data over time, allowing researchers to track patients' progress, treatment outcomes, and long-term effects of interventions. This longitudinal data can provide valuable insights into disease progression and treatment efficacy. Due to the sensitive nature of medical information, strict privacy and ethical considerations are essential when collecting, storing, and sharing data in medical registries. Data is often de-identified or anonymized to protect patients' identities.

Medical registries can either be national or international. National registries are set up for patients living in one particular country. However, there are medical conditions that are classified as ultra-rare and the number of patients in each country is likely to be very low. In these instances, international registries are therefore considered to be more appropriate. Some medical registries focus on specific populations, such as registries for specific ethnic groups, geographic regions, or age ranges. These population-focused registries can help uncover unique health patterns and disparities.