NASS Launches Their Registry
The newly launched NASS registry covers spinal diagnoses and procedures. AAOS has also started a spine registry, and the two organizations say they are discussing potential cooperation between the two.
We sent AAOS and NASS a list of questions about their registries. Below are some questions and summarized answers.
The NASS answers came by email from Zoher Ghogawala, M.D. FACS, Chairman of the Department of Neurosurgery at Tufts University and also the NASS Research Council Director and one of the architects of the NASS Spine Registry.
For AAOS and the AJRR, respondents in a live interview were Kevin Bozic, M.D., with the Dell Medical School at the University of Texas, Austin, Chair of the American Joint Replacement Registry’s steering committee; Paul Haisman, AAOS’ Chief Information Officer; and Lori Boukas, Director of Marketing and Communications for AJRR.
Who is running your registry?
NASS: The society and its vendor, Ortech Data Systems run the NASS system. Ortech develops registries for others as well.
AAOS/AJRR: The AJRR registry was developed in house by AJRR.
AOA (website): The registry, totally web-based, uses a framework called Tempo, owned by a contracted research organization, Clinipace Inc.
How does the data get into the registry?
NASS: Clinicians enter data manually at the time of patient encounter; patients enter data from Patient-Reported Outcome (PRO) surveys; both use “a secure and easy-to-use web portal.”
AJRR (Haisman): “Currently, registry participants extract files directly from their respective EHR and Patient Reported Outcome (PRO) systems into AJRR-supplied file formats. The files are then uploaded by the institutions directly to the AJRR SFTP (secure FTP) or HTTPS location.
AOA (website): Data is entered using web-based forms as well.
What kinds of data are being collected?
NASS Collects: “Confidential―Data is de-identified at point of entry. No personal health information reaches NASS or its vendor. NASS sees only the de-identified, aggregate data pool,” says a page at the NASS registry site. The website doesn’t say which data elements are collected.
AJRR Collects: (1) individually-identifiable patient data, diagnoses, and provider identifier; (2) the individual patient’s risk factors, comorbidities, and complications; and (3) patient-reported outcomes. For full details, see: http://www.ajrr.net/enroll-with-us/all-about-the-data/data-elements-we-collect-2.
AJRR says it is HIPAA-compliant and HITECH-compliant and uses industry-best security to protect patient privacy.
AOA’s Own the Bone Collects: The de-identified data described on these web pages: https://www.ownthebone.org/OTB/Enroll/Own_the_Bone_Registry/OTB/Enroll/Own_the_Bone_Registry.aspx and https://www.aoassn.org/aoaimis/OTB/About/What_Is_Own_the_Bone.aspx.
