Linkage Between Neurological Registry Data and Administrative Data

Atwood, Kristin; Hamilton, Mark A.; Hayward, Rachel; Day, Lundy; Mobach, Theo; Maxwell, Colleen J.; Fortin, C; Fiebelkorn, Guillermo; Barlow, Karen M.; Shevell, Michael; Kapral, Moira K.; Casha, Steve; Johnston, Megan; Wiebe, Samuel; Pringsheim, Tamara

doi:10.1017/s0317167100017145

Cited by 4 publications

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“…Linkage of registry data to other data sources is a means of reducing direct data collection burden, expanding the scope of questions that can be answered, and enhancing registry impact. 24 Potentially linkable data sources include administrative (health claims) data, census data, and imaging and laboratory data. Multiple MS studies have linked registries with administrative health data.…”

Section: Discussionmentioning

confidence: 99%

“…In addition to requesting medical record review or confirmation of diagnosis by a treating clinician, other strategies to increase confidence in self-reported diagnoses include capturing additional information regarding medication history or disease characteristics 23 and linkage (with consent) to other data sources, such as administrative health claims data. 24…”

Section: What Are the Data Quality And Management Issues?mentioning

confidence: 99%

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NARCOMS and Other Registries in Multiple Sclerosis

Marrie

Cutter

Fox

et al. 2021

International Journal of MS Care

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CE Information Activity Available Online: To access the article, post-test, and evaluation online, go to https://www.highmarksce.com/mscare. Target Audience: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health care providers involved in the management of patients with multiple sclerosis (MS). Learning Objectives: 1) Describe what constitutes a registry. 2) Discuss the difference(s) between clinician-driven and patient-driven registries, including potential advantages of patient-driven registries. Accreditation Statement: In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Physician Credit: The CMSC designates this journal-based activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Nurse Credit: The CMSC designates this enduring material for 1.0 contact hour of nursing continuing professional development (NCPD) (none in the area of pharmacology). Disclosures: Francois Bethoux, MD, Editor in Chief of the International Journal of MS Care (IJMSC), has served as Physician Planner for this activity. He has disclosed relationships with Springer Publishing (royalty); Qr8 (receipt of intellectual property rights/patent holder); Biogen (receipt of intellectual property rights/patent holder, speakers’ bureau); MedRhythms (consulting fee, contracted research); GW Pharmaceuticals, Genentech, Helius Medical Technologies, Osmotica, Ipsen (consulting fee); and Adamas Pharmaceuticals (contracted research). Ruth Ann Marrie, MD, PhD, has disclosed being a co-investigator on a study funded by Biogen and Roche. Gary R. Cutter, PhD, has disclosed serving on the data/safety monitoring committees for AstraZeneca, Avexis Pharmaceuticals, BioLineRx, BrainStorm Cell Therapeutics, Bristol Myers Squibb/Celgene, CSL Behring, Galmed, Green Valley Pharma, Mapi Pharmaceuticals, Merck, Merck/Pfizer, Mitsubishi Tanabe, OPKO Biologics, Neurim, Novartis, Orphazyme, Sanofi, Reata, Teva, Viela Bio, the National Heart, Lung, and Blood Institute (Protocol Review Committee), and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (Obstetric-Fetal Pharmacology Research Unit Oversight Committee); serving on consulting/advisory boards for Alexion, Antisense Therapeutics, Biodelivery Sciences International, Biogen, Clinical Trial Solutions LLC, Genzyme, Genentech, GW Pharmaceuticals, Immunic, Klein Buendel, MedImmune/Viela Bio, MedDay, Merck/Serono, Neurogenesis Ltd, Novartis, Osmotica, Perception Neuroscience, Protolix Biotherapeutics, Recursion/Cerexis Pharmaceuticals, Regeneron, Reckover Pharmaceuticals, Roche, SAB Biotherapeutics, and TG Therapeutics; and being president of Pythagoras, Inc, a private consulting company. Robert J. Fox, MD, MSc, has disclosed receiving consulting fees from AB Science, Biogen, Celgene, EMD Serono, Genentech, Genzyme, Immunic, Janssen, Novartis, Sanofi, and TG Therapeutics; research funding from Biogen, Novartis, and Sanofi; and royalties from Demos Publishing. Timothy Vollmer, MD, has disclosed receiving compensation for lectures and consultancy from Biogen, Genentech/Roche, Viela Bio, Celgene, EMD Serono, and Novartis; and research support from Rocky Mountain Multiple Sclerosis Center, Celgene, Biogen, Anokion, Genentech, F. Hoffmann-La Roche Ltd, GW Pharmaceuticals, and TG Therapeutics Inc. Tuula Tyry, PhD, has disclosed no relevant financial relationships. Amber Salter, PhD, has disclosed serving as a statistical editor for Circulation: Cardiovascular Imaging. The staff at IJMSC, CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Laurie Scudder, DNP, NP, Continuing Education Director CMSC, has served as Reviewer for this activity. She has disclosed no relevant financial relationships. One peer reviewer for IJMSC has disclosed relationships with Alexion (consulting fee, speakers’ bureau); Biogen, Bristol Myers Squibb, EMD Serono, Genentech (consulting fee, speakers’ bureau, contracted research); Celgene, Novartis, Sanofi Genzyme (consulting fee, contracted research); Viela Bio (consulting fee); National MS Society, PCORI, Atara Biotherapeutics, Roche (contracted research); and Taro Pharmaceuticals, AstraZeneca, Pfizer, Johnson & Johnson, Inovio, GlaxoSmithKline, Viatris, Gilead, Altimmune Inc, CytoDyn Inc (ownership interest [common stocks]). The other peer reviewer has disclosed relationships with Celgene (speakers’ bureau, contracted research); and Merck, EMD Serono, Roche, AbbVie (contracted research). Note: Financial relationships may have changed in the interval between listing these disclosures and publication of the article. Method of Participation: Release Date: December 1, 2021 Valid for Credit Through: December 1, 2022 In order to receive CME/NCPD/CPE credit, participants must: 1) Review the continuing education information, including learning objectives and author disclosures.2) Study the educational content.3) Complete the post-test and evaluation, which are available at https://www.highmarksce.com/mscare. Statements of Credit are awarded upon successful completion of the evaluation and the post-test with a passing score of >70%. The post-test may be retaken if necessary. There is no fee to participate in this activity. Disclosure of Unlabeled Use: This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. The CMSC and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the CMSC or Delaware Media Group. Disclaimer: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health care professionals without first evaluating their patients’ conditions, considering possible contraindications or risks, reviewing any applicable manufacturer’s product information, and comparing any therapeutic approach with the recommendations of other authorities.

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Section: Discussionmentioning

confidence: 99%

Section: What Are the Data Quality And Management Issues?mentioning

confidence: 99%

NARCOMS and Other Registries in Multiple Sclerosis

Marrie

Cutter

Fox

et al. 2021

International Journal of MS Care

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“…Accuracy and validation of such algorithms are essential when using claims to study populations of epilepsy patients and when drawing conclusions about treatments, resource utilization, health care costs 11 and outcomes. 4 –7,12 –15 Previous literature had attempted for such an evaluation using a nonvalidated algorithm 9 using ICD coding without chart validation. However, these authors can now feel confident their approach is valid.…”

Section: Discussionmentioning

confidence: 99%

“…However, accurate identification of epilepsy patients from claims can be challenging due to poor specificity and sensitivity of many of the codes. 4 –8 Providers often misuse the current coding system which creates the biggest gap 5 in the use of these codes. For infantile spasms, there is limited previous work to identify affected patients in claims data.…”

mentioning

confidence: 99%

Validating an Algorithm to Identify Patients With Infantile Spasms Using Medical Claims

et al. 2018

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An infantile spasm is a brief seizure type that is characteristic of West syndrome. Many infants present with infantile spasms between 3-12 months of age. Early diagnosis and proper treatment of patients with infantile spasms can lead to improved clinical outcomes. However, proper identification of these patients using claims data with validation has not been performed. The authors developed and tested several algorithms using claims data. Claims data consisted of using International Classification of Disease (ICD), Current Procedural Terminology (CPT), and prescription codes. Access to the claims database was from an accountable care organization. The algorithm using the specific ICD code for infantile spasms only performed the best with high sensitivity and specificity. This algorithm can be used to perform additional research in claims data for patients with infantile spasms.

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“…While linking different data sources represents a unique opportunity to bring together the strengths of each database, patient-level linking remains a challenge, and linked databases in MS are rare [ 7 ]. To date, there have been only a few studies employing linked RWD data sources in MS.…”

Section: Introductionmentioning

confidence: 99%

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

Ghiani

Zhuleku²,

Dillenseger

et al. 2023

JCM

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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.

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Linkage Between Neurological Registry Data and Administrative Data

Cited by 4 publications

References 0 publications

NARCOMS and Other Registries in Multiple Sclerosis

NARCOMS and Other Registries in Multiple Sclerosis

Validating an Algorithm to Identify Patients With Infantile Spasms Using Medical Claims

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

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