Q: What is a clinical registry?
A: A clinical registry is a data collection and management system that extracts data from a patient's medical record and an office's practice management system to assess the quality of care for an individual patient and a population of patients.

Q: Why is the AAN providing this service?
A: The AAN is developing the Axon Registry as part of the Academy's mission of quality improvement in the delivery of neurological care. The data in Axon Registry will serve as the foundation for internal and specialty-wide quality initiatives. In addition, public and private payers are increasingly using quality data to determine physician payment.

Q: How is the AAN delivering the technology?
A: The AAN is collaborating with FIGMD, Inc., a company that specializes in integrating EHRs with registries, in the development of the Axon Registry.

Q: How does the Axon Registry work?
A: The Axon Registry extracts data from the office EHR and transmits data directly to the registry. From the dashboard portal, participating neurologists can access the data, run queries on their own patient population, benchmark practice performance, and uncover potential areas for quality improvement. The Axon Registry is designed to minimally affect practices and physician workflows.

Q: What data would I have access to as a participant?
A: AAN staff is in the process of developing the capability for users to run quality reports that provide results for all measures at clinician, practice, and national levels. Currently, participants have access to their own performance data and in the future will be able to compare their performance and outcomes to their own practice partners or to similar practices at the regional and national levels.

Q: Is it necessary to have an EHR to participate?
A: Yes. Encounter data from the practice EHR  is transferred into the Axon Registry by one of two EHR-driven methods: the Pull method and the Push method. Visit the EHR Compatibility webpage for more information.

Q: What is the cost of participation?
A: To encourage widespread adoption, the AAN is offering multi-year, fee-free access to member neurologists who sign the agreements and integrate their EHR with the Axon Registry. Please note that some EHRs have a fee for integrating with a registry, check with your EHR representative for more information.

Q: Do you have to be an AAN member to participate?
A: Yes. Participation in the Axon Registry is open to US-based practicing AAN members. If you are not a member but are an ABPN diplimate you can pay a fee to participate.

Q: Will the Axon Registry include patient data from other health care settings (hospitals, long term care, skilled nursing facilities)?
A: Only ambulatory encounter data will be in the Axon Registry. The Axon Registry is designed for outpatient neurologist participation. There are no plans to include inpatient or LTC measures.

Q: Do all physicians in a practice need to participate in the Axon Registry?
A: It is not required that all physicians participate, but participation by all physicians in the practice is strongly encouraged to generate data that most accurately reflects practice performance.

Q: What identifiable data on physicians or patients will be associated with my data?
A: Practices that join the Axon Registry enter into an agreement with the AAN, which includes a HIPAA-compliant Business Associate Agreement and Data Use Agreement (for the use of limited data set information). The Axon Registry collects, stores, and reports data on a neurologist's behalf to payers and certification bodies, taking every measure possible to safeguard it. The AAN's technology partner, FIGMD, is compliant with all local and federal regulations governing these areas, including HIPAA provisions and the recently updated provisions as part of the American Recovery and Reinvestment Act/Health Information Technology for Economic and Clinical Health Act.  

• Provider data: Axon Registry will have access to the provider's National Provider Identification number, Tax Identification Number for the practice, and individual performance data. The Axon Registry will not publish any identifiable provider or practice data without permission.
• Patient data: Protected Health Information (PHI) is being submitted only to FIGMD and then (via FIGMD) to CMS for quality improvement purposes. A limited data set will be provided, but not sold, to a partner analytics center, who will conduct data analysis on behalf of the AAN and other data requesters. The limited data set will not be provided to or sold to data requesters, including industry. The AAN will not have access to fully identifiable, individual patient data, but may have access to limited data set information.

Q: Who will have access to my data?
A: The Axon Registry collects, stores, and reports data on a neurologist's behalf to payers and certification bodies, taking every measure possible to safeguard it. The AAN's technology partner, FIGMD, is compliant with all local and federal regulations governing these areas, including HIPAA provisions and the recently updated provisions as part of the American Recovery and Reinvestment Act/Health Information Technology for Economic and Clinical Health Act.

Q: How will the AAN use the data in the Axon Registry?
A: The AAN will only have access to aggregated data, either in the form of de-identified patient data or a limited data set. The AAN will not have access to fully identified individual patient data or individual provider data. Based on the aggregate data, the AAN will calculate benchmarks upon which to compare neurologists' outcomes, analyze patient populations, and study practice patterns. The AAN will also use these data to improve its products and services, including guidelines, measures, advocacy, and education. In addition, this will be a valuable neurology-focused database and we will be able to provide real world evidence to researchers seeking to conduct secondary data analysis. These analyses will improve the care and outcomes of patients with neurologic disease. The AAN's contracted data analytics center will conduct data analysis on behalf of the AAN and data requesters based on this data. The AAN may charge for the reports generated from this analysis to help offset the costs of operating the Axon Registry. For more detailed information please review the Data Governance Policy.

Q: Where is the Axon Registry located?
A: The AAN Axon Registry is supported by cloud-based services, with infrastructure located in the US. The Axon Registry vendor, FIGMD, has technical infrastructure support in India. The Axon Registry is not located at the AAN headquarters in Minneapolis, Minnesota.

Q: Do we need to install anything on our practice computer system?
A: If you choose the pull data extraction method, you will need to install the Registry Practice Connector (RPC) software either on the practice EHR database server, or on a computer that has access to the EHR database (or a current copy). RPC software runs as a service and requires Microsoft Windows operating system with Microsoft .NET Framework 3.0 installed.

A read-only user account is required for the RPC to directly access the EHR database (not via the EHR application). The RPC establishes a connection to FIGMD’s system on port 7171 using a 256-bit Rijndael encryption key. Sessions on this connection are always initiated from the medical practice side. The connection can never be started from FIGMD’s system.

Q: How is the protected health information (PHI) used?
A: The patient/encounter-related clinical data uploaded to FIGMD’s system is separated into de-identified clinical data and PHI data. The PHI data is secured until re-identification is needed for MIPS submission to CMS. The PHI data is not used in any other way. The AAN does not receive any PHI data.

Q: How is the clinical data stored?
A: The de-identified clinical data is stored in a HL7 CDA- compliant format.

Q: What data is available to Enterprise Quality Management Systems?
A: The following web service-based application programming interfaces (APIs) provide structured data for enterprise-wide quality initiatives:

• Provider level calculated performance score: These are delivered in a structured QRDA Level 3
• Encounter level calculated performance score: These are delivered in a HL7 DFT message generated per encounter
• Registry Data Dictionary imputed values: These are delivered via a csv file