What Is a Clinical Data Registry?
A clinical registry is a computer database that collects information about your health and the care you receive as a patient. The data in the registry comes from the information your healthcare provider collects while providing your care and is added to information on other patients who are similar to you. It is then used to help improve the quality of your care as well as the care of other patients, now and in the future. This article provides answers to the most common questions patients have about clinical registries.
What does a registry do?
Registries collect information on large numbers of similar patients. This information may include things like: a patient’s reasons for seeking care, treatments they received, and how well they did over time.
Because a registry can collect this kind of information about many patients, your doctor can help you choose treatments that have tended to work well for patients like you. If you have an implant, for example, information from registries may also be used to identify poorly performing implants and can alert your hospital about recalls to those components.
How does a registry work?
There are many types of registries. Some track patients who have a particular disease or condition. Others track the performance of medical devices such as artificial joints. Medical experts use information from the registry to understand how well different approaches to treating a condition work.
How does a registry collect data?
When your hospital, clinic, or physician is participating in a registry, the information about your health and the care that you receive is electronically recorded by your physician, or their staff, into a secure database that protects your privacy. Registries take data privacy and security protocols very seriously and follow health privacy rules and regulations to protect your health information.
Another aspect of collecting registry information is in the form of surveys and evaluations directly to you, the patient, asking about your post-procedure experiences; questions about pain, stiffness, and your ability to function. The results are known as patient-reported outcomes (PROs) and are important additional pieces of information to be included with your medical profile. Therefore, if your physician asks you to complete a short survey about how you are feeling after your appointment or treatment, it is very important that you complete the survey.
Why are registries so important?
When data about similar diseases, conditions, or treatments are entered into a registry, the information is used by doctors and other medical experts to improve the quality and safety of the care you and other patients receive, now and in the future. Information from registries also supports medical education and the certification of physicians and healthcare professionals such as nurses and physical therapists. In short, registries help patients like you receive the best possible care so that you can live better.
Can I access the information in a registry?
Registries often have websites that explain the work they are doing, provide access to scientific studies that used their data and, in some cases, provide information to the public on the performance of hospitals or doctors.
About the American Academy of Orthopaedic Surgeons (AAOS) Registry Program
AAOS, the preeminent provider of musculoskeletal education to orthopaedic surgeons and others in the world, maintains a Registry Program. The AAOS Registry Program consists of multiple clinical data registries that encompass different anatomical areas for orthopaedics, and currently includes:
- American Joint Replacement Registry (for hip and knee replacements)
- Shoulder & Elbow Registry (for shoulder replacements, rotator cuff repair, and elbow replacements)
- Musculoskeletal Tumor Registry (MsTR) for orthopaedic oncology
Learn more about the AAOS Registry Program here.
In addition to the AAOS Registry Portfolio, the American Association of Neurological Surgeons (AANS) and AAOS have joined in collaboration to launch the American Spine Registry. Both organizations have joint ownership and leadership representation in this effort.
For more information on how clinical data registries help improve patient care: Registry Resources for Patients.
AAOS does not endorse any treatments, procedures, products, or physicians referenced herein. This information is provided as an educational service and is not intended to serve as medical advice. Anyone seeking specific orthopaedic advice or assistance should consult his or her orthopaedic surgeon, or locate one in your area through the AAOS Find an Orthopaedist program on this website.