Data Resource Profile: The Multiple Sclerosis Documentation System 3D and AOK PLUS Linked Database (MSDS-AOK PLUS)

Abstract

Real-world evidence in multiple sclerosis (MS) is limited by the availability of data elements in individual real-world datasets. We introduce a novel, growing database which links administrative claims and medical records from an MS patient management system, allowing for the complete capture of patient profiles. Using the AOK PLUS sickness fund and the Multiple Sclerosis Documentation System MSDS3D from the Center of Clinical Neuroscience (ZKN) in Germany, a linked MS-specific database was developed (MSDS-AOK PLUS). Patients treated at ZKN and insured by AOK PLUS were recruited and asked for informed consent. For linkage, insurance IDs were mapped to registry IDs. After the deletion of insurance IDs, an anonymized dataset was provided to a university-affiliate, IPAM e.V., for further research applications. The dataset combines a complete record of patient diagnoses, treatment, healthcare resource use, and costs (AOK PLUS), with detailed clinical parameters including functional performance and patient-reported outcomes (MSDS3D). The dataset currently captures 500 patients; however, is actively expanding. To demonstrate its potential, we present a use case describing characteristics, treatment, resource use, and costs of a patient subsample. By linking administrative claims to clinical information in medical charts, the novel MSDS-AOK PLUS database can increase the quality and scope of real-world studies in MS.

Claims-based algorithm to estimate the Expanded Disability Status Scale for multiple sclerosis in a German health insurance fund: a validation study using patient medical records

“…This retrospective cohort study used administrative claims data from a German statutory health insurance (AOK PLUS) linked to medical records from the Multiple Sclerosis Management System 3D (MSDS 3D ), a computer-based patient management system provided by the Center for Clinical Neuroscience in Dresden (Zentrum für Klinische Neurowissenschaften, ZKN) ( 16 – 19 ).…”

“…To generate a linked dataset between AOK PLUS and MSDS 3D , patients attending regular clinical visits at ZKN who were insured by AOK PLUS were recruited and asked to provide informed consent ( 19 ). A list of pseudonymized registry IDs and AOK PLUS insurance numbers were provided by ZKN to AOK PLUS.…”