Types
 | The examples and perspective in this section may not represent a worldwide view of the subject.(November 2025) |
Many measures registries track are based on evidence-based medicine and are defined and standardized by national organizations like the NCQA.
Medical conditions tracked
As of November 2025, the NIH listed 80 disease registries on its website. [4] The lastest one to be launched in the US was the autism registry. [5]
Registries target certain conditions because medical expenses are unevenly distributed: most health care expenses are spent treating patients with a few chronic diseases. [6] As of 2011 more than 130 million Americans lived with chronic diseases and chronic diseases accounted for 70% of all deaths in the US. "The medical care costs of people with chronic diseases account for more than 75% of the nation's $2 trillion medical care costs." [7]
Diabetes is one of the conditions tracked by registries. Diabetes is also amenable to this because there is a defined target population and there is evidence that certain tests like retina exams, LDL levels, HgbA1c levels correlate with quality of care in diabetes. [8]
New York City created a HbA1C Registry (NYCAR) to help health providers keep track of patients with diabetes. [9]
Another example of disease registry is the New York State CABG Registry that tracks all cardiac bypass surgery performed in the state of New York. [10]
The Australian cerebral palsy register represents an example of a recognized disease register. [11] The aim of the Australian CP register is to conduct surveillance or constant observation of cerebral palsy prevalence, clinical patterns and complications. It is also tasked with providing recommendations to public health policy makers and improving health service delivery to individuals with cerebral palsy. [12] More recently, several developing countries such as Bangladesh and Sri lanka have established cerebral palsy registers geared toward achieving the same above-noted aims. [13] [14] [15]
Tests like Pap smears are also useful to keep track in registries[ citation needed ] because there is evidence that when done annually in women of certain ages groups can detect and prevent cervical cancer. [16]
International
Below is a small list of international patient registries.
- Newborn Screening (NBS) Connect Patient Registry for patients with inborn errors of metabolism [17]
- DuchenneConnect Patient Registry for patients with Duchenne and Becker Muscular Dystrophy. [18]
- PatientCrossroads – pan disease patient registries [19]
- International Collaborative Gaucher Group (ICGG) Gaucher Registry is largest ongoing longitudinal international database that tracks demographic and clinical outcome data from patients with Gaucher disease [20]
- Vascular health ASsessment Of The hypertENSive patients (VASOTENS) Registry, the international registry for ambulatory blood pressure and arterial stiffness telemonitoring. [21]
- TREAT-NMD patient registries in neuromuscular disorders [22]
Medical devices
Countries like Australia, Britain, Norway, Sweden, [23] and America [24] have a national joint replacement registry to track patients with artificial joints.
"The use of joint registries has proven beneficial abroad. In Australia, regulators use such data to force manufacturers to justify why poorly performing hips or knees should remain available, and products have been withdrawn as a result. In Sweden several years ago, surgeons alerted by their national registry stopped using a badly flawed hip long before their American counterparts did. A few medical organizations in the USA, like Kaiser Permanente, operate their own registries to good effect and the Hospital for Special Surgery in New York has recently set up a registry. Experts say that the United States wastes billions of dollars annually on medical treatments which may not work. But the financial and human consequences are also large when evidence exists but is not collected." [25]