Patient registries collect standardized information about a group of patients that share a similar disease or condition. The types of registries vary quite a bit. Patient registries serve many purposes in healthcare. Stakeholders like pharmaceutical companies, doctors, and medical researchers all could benefit from this valuable data.
While the main purpose a patient registry serves is to examine the course of a disease and the effectiveness of treatments, it can be set up to further other (secondary) objectives as well.
Types of Registries
Let’s look at the type of patient registries available in healthcare.
Professional Reported Registries
Such registries include data that is collected by doctors. These registries are usually not available on public websites.
Patient Reported Registries
In such a registry, patients are asked to provide information. These registries are usually available on a public site for people to access.
Information is provided by both doctors and patients.
National registries are limited to the people who reside in one country. National registries may exist in every country for the same condition or disease. However, these are independent of each other, depending on the purpose they serve. National registries are used when there is a sufficient amount of patients in the country itself that you need not look elsewhere.
International registries are often used when there are not enough patients in the same country when it comes to a certain disease or condition. These registries are usually set up for ultra-rare conditions, where national registries don’t make much sense. In such an event, patients with the same disease are asked to contribute to this one registry.
Type of Data Patient Registries Collect
While patient registries follow the same format, more or less, they all could have a different objective. Most often, the data collected by patient registries is as follows, listed in order of highest to the lowest frequency.
- Overall patient landscape
- Data on genetics
- Patient reported outcomes
- Detailed medical data
- Clinical trial matching
List of Registries Available
There are many patient registries available that will serve different purposes. Some of these conditions have more than one national registry but only one international registry. Most registries are named by disease for better clarity.
- Charcot Marie Tooth Disease
- Congenital muscular dystrophies
- Duchenne/Becker muscular dystrophy
- Spinal muscular atrophy
- Alzheimer’s Prevention Registry
- Children’s Health Foundation Pediatric Asthma Registry
- Congenital Heart Disease Genetic Network Study (CHD GENES)
- Congenital Muscle Disease International Registry (CMDIR)
- Collaborative Islet Transplant Registry
Patient registries have immense scope in today’s day and age. They make systematic data collection easier and can be honed to any specific purpose. But you don’t just need a patient registry to achieve your healthcare goal-you also need the right patient registry software.
Clinical Pursuit offers patient registry software solutions that can build and consequently collect data on hundreds, even thousands of patients. This HIPAA compliant software is all you need to efficiently collect data in a quick and accurate manner. Get results that you can really depend on!