Axon Registry: Will It Improve Care?


Initial measures in the Axon Registry will assess care for Parkinson disease, epilepsy, distal symmetric polyneuropathy, dementia, headache, multiple sclerosis, and sleep apnea.


The American Academy of Neurology (AAN) embarked on creating a registry to be used for quality improvement in December of 2014. The pilot phase completed in 2016. The Axon Registry® is a quality improvement registry that will collect data on patients and track practice performance and patient outcomes on quality measures.1,2 It is now available at no cost to AAN members in the US. The AAN works with FIGMD, Inc, a company that specializes in integrating electronic health records with data registries.

The Axon Registry is a centralized data warehouse that collects patient data and performs statistical analysis on certain existing neurology quality measures. Thus far, almost 2 million patient visits have been collected. This registry meets requirements for the merit-based incentive program through the quality payment program.

The information provided to practices and providers can be used to show current performance on the quality measures, and to develop a quality improvement project to improve the performance on the measures. This will directly improve patient care. The AAN developed the Axon Registry as part of the Academy’s mission of quality improvement in the delivery of neurological care. Registries have been used in the past by other specialties for a similar fashion.3-5

The Axon Registry works by automatically extracting data from the office- or practice-setting electronic health records. Data is transmitted directly to the registry. From a dashboard, participating neurologists can access the data, run queries on their own patient population, benchmark practice performance, and uncover potential areas for quality improvement. Importantly, the Axon Registry is designed to minimally affect practices and physician workflows as no additional data entry is needed.

Once set-up and integration with the electronic health records are complete, the registry collects data in the background from discrete data fields and clinical notes. The entirety of the clinical note and other areas are collected.

The Axon Registry collects data on quality measures developed by the AAN and approved by the AAN Board of Directors and several cross-cutting measures used by Centers of Medicare and Medicaid in the merit-based incentive program. Approximately 30 quality measures are present in the registry with more being added once approved.

A committee has been formed to select important and relevant quality measures that will affect most general neurology practices, but also some measures pertinent to neurology’s subspecialists. Thus far, six cross-cutting measures are included. The initial measures in the Axon Registry will assess care for Parkinson disease, epilepsy, distal symmetric polyneuropathy, dementia, headache, multiple sclerosis, and sleep apnea.

The AAN will only have access to aggregated de-identified data, not individual patient data. Based on the aggregate data, the AAN will assess neurology provider performance and look at overall trends in the patient population. Further, the information from the Axon Registry will also allow the AAN to better focus its educational programming and service offerings for members to address gaps and barriers to care.

Practices that join the Axon Registry enter into an agreement with the AAN. This includes a HIPAA-compliant Business Associate Agreement and a Data Use Agreement. The Axon Registry captures and stores Personal Health Information and identifiable provider information in accordance with federal and state laws and regulations. Identifiable provider or practice data will not be published. Moreover, the AAN will not have access to individual patient data.

Participation in the Axon Registry will have several benefits. A practice or provider can obtain data that have been calculated on existing quality measures. The data can be used for reimbursement in the quality payment program or other similar programs that may be developed.

In addition, participation in the Axon Registry assists in fulfilling three of the four areas within the quality payment program (quality, improvement activities, and advancing care information). The fourth component is solely based on Medicare claims data that will come from the Centers of Medicare and Medicaid.

A practice can also use the data to identify care gaps based on poor performance on specific measures compared with peers in similar care settings. Most importantly, the data can be used as baseline data, which is absolutely essential in developing quality improvement projects that will improve patient care, and patient satisfaction, and it will decrease health care costs, thereby achieving the Triple Aim of health care.6

Although an important first step, the development of quality measures has not alone driven quality improvement.7 The registry is an important next step, building on the work done by measure developers to provide electronic implementation of the quality measures. Finally, the registry data will showcase the value of neurological care and its impact on population health, which can be difficult to measure and quantify.8

In summary, the AAN is committed to providing the Axon Registry at no cost to its US members to assist in improving patient care by providing meaningful data that will be used for quality improvement purposes. To learn more about the Axon Registry and enroll, visit or send questions to:


1. Sigsbee B, Goldenberg JN, Bever Jr CT, et al. Introducing the Axon Registry: an opportunity to improve quality of neurologic care. Neurol. 2016;87:2254-2258.

2. Busis NA, Franklin GM. The AAN’s Axon Registry: mastering how we are measured. Neurol. 2016;87:2180-2181.

3. Stey AM, Russell MM, Ko CY, et al. Clinical registries and quality measurement in surgery: a systematic review. Surgery. 2015;157:381-395.

4. Zehtabchi S, Nishijima DK, McKay MP, Mann NC. Trauma registries: history, logistics, limitations, and contributions to emergency medicine research. Acad Emerg Med. 2011;18:637-643.

5. Cooke CR, Iwashyna TJ. Using existing data to address important clinical questions in critical care. Crit Care Med. 2013;41:886-896.

6. Berwick DM, Nolan TW, Whittington J. The triple aim: care, health, and cost. Health Aff (Millwood). 2008;27:759-769.

7. Sigsbee B, Bever Jr CT, Jones Jr LK. Practice improvement requires more than guidelines and quality measures. Neurol. 2016;86:188-192.

8. Jones Jr LK, Nuwer MR. Measuring the value of neurology. Neurol. 2016;86:320-321.

Recent Videos
David T. Jones, MD
Clifford R. Jack Jr., MD
 Lisa Mosconi, PhD
Emma Ciafaloni, MD, an expert on Duchenne muscular dystrophy
 Justin Davanzo, MD
1 KOL is featured in this series.
Aliza Ben-Zacharia, PhD, DNP, ANP-BC, FAAN
5 KOLs are featured in this series.
© 2024 MJH Life Sciences

All rights reserved.