Deutsch
AG Regierer
Registry Research in Rheumatology
The term “medical register” describes an organised system in which prospective and standardised patient data is collected. Alongside clinical studies, medical registries are important tools for researching new therapies and for improving and reviewing established treatment procedures. The DRFZ has been successfully running various registries throughout Germany for many years, in particular RABBIT, RABBIT-SpA, RheKISS and Jumbo.
The methodological development of registries is an important goal of our working group. The expertise of the programme area will be used to optimise our current registries and, if necessary, to establish new ones.
The core project of the Registry Research Group is the RABBIT-SpA disease registry. RABBIT-SpA was initiated by us in 2017 and over 3,500 patients have already been included in it. The registry examines questions related to the long-term efficacy and safety of drugs for the treatment of patients with axial spondyloarthritis (axSpA) and psoriatic arthritis (PsA).
The Registry Research in Rheumatology Group is already working on various projects to further develop registers. For example, a data protection-compliant process for connecting a medical smartphone app has been planned and implemented. This makes it possible to generate patient data in ways other than just via questionnaires that are answered by rheumatologists. The process was designed in such a way that other apps can also be integrated in the future.
Another milestone has been the implementation of a data protection-compliant process for uploading pseudonymised imaging files to the registry. This enables blinded central analyses of the images. There are a number of unanswered questions regarding the imaging of inflammatory processes of the axial skeleton in particular, so that our data, in combination with the clinical data from the registry questionnaires, represents a good source of data for many burning research questions.
Other innovative projects include the connection of RABBIT-SpA to the documentation software for rheumatology RheMIT and the digitalisation of RABBIT. There is great potential for record linkage, i.e. the direct linking of register data with other data sources. A pilot project is currently being set up to link RABBIT data with cancer registry data. Other data sources for a possible linkage are billing data and other medical registers.
Group leader
PD Dr. med. Anne C. Regierer
Dr. Anja Weiß
Andreas Reich
Lisa Lindner
Anja Georgi
Carina Wittkopp
Josephin Baumert
Stephanie Lembke
- Depressive symptoms are associated with fatigue, poorer functional status and less engagement in sports in axSpA and PsA: an analysis from the RABBIT-SpA cohort. Reich A, Weiß A, Lindner L, Baraliakos X, Poddubnyy D, Zinke S, Stille C, Strangfeld A, Regierer AC. Arthritis Res Ther. 2023 Aug 2;25(1):136. doi: 10.1186/s13075-023-03127-2. PMID: 37533077 Free PMC article.
- Characteristics associated with poor COVID-19 outcomes in people with psoriasis, psoriatic arthritis and axial spondyloarthritis: data from the COVID-19 PsoProtect and Global Rheumatology Alliance physician-reported registries. Machado PM, Schäfer M, Mahil SK, Liew J, Gossec L, Dand N, Pfeil A, Strangfeld A, Regierer AC, Fautrel B, Alonso CG, Saad CGS, Griffiths CEM, Lomater C, Miceli-Richard C, Wendling D, Alpizar Rodriguez D, Wiek D, Mateus EF, Sirotich E, Soriano ER, Ribeiro FM, Omura F, Rajão Martins F, Santos H, Dau J, Barker JN, Hausmann J, Hyrich KL, Gensler L, Silva L, Jacobsohn L, Carmona L, Pinheiro MM, Zelaya MD, Severina MLÁ, Yates M, Dubreuil M, Gore-Massy M, Romeo N, Haroon N, Sufka P, Grainger R, Hasseli R, Lawson-Tovey S, Bhana S, Pham T, Olofsson T, Bautista-Molano W, Wallace ZS, Yiu ZZN, Yazdany J, Robinson PC, Smith CH. Ann Rheum Dis. 2023 May;82(5):698-709. doi: 10.1136/ard-2022-223499. Epub 2023 Feb 14. PMID: 36787993 Free PMC article.
- Characteristics and outcomes of SARS-CoV-2 breakthrough infections among double-vaccinated and triple-vaccinated patients with inflammatory rheumatic diseases. Hasseli R, Richter JG, Hoyer BF, Lorenz HM, Pfeil A, Regierer AC, Schmeiser T, Strangfeld A, Voll RE, Krause A, Reckert S, Gräßler A, Saar P, Kapelle A, Backhaus M, Blank N, Henes J, Osiek S, Knothe A, Hoese G, Brandt-Jürgens J, Maltzahn A, Specker C, Müller-Ladner U, Schulze-Koops H; COVID-19 task force of the German Society of Rheumatology collaborators; COVID19-Rheuma.de collaborators. RMD Open. 2023 Apr;9(2):e002998. doi: 10.1136/rmdopen-2023-002998. PMID: 37068915 Free PMC article.
- Comparison of patients with axial PsA and patients with axSpA and concomitant psoriasis: an analysis of the German register RABBIT-SpA. Regierer AC, Weiß A, Proft F, Baraliakos X, Behrens F, Poddubnyy D, Schett G, Lorenz HM, Worsch M, Strangfeld A. RMD Open. 2023 Mar;9(1):e002837. doi: 10.1136/rmdopen-2022-002837. PMID: 36898762 Free PMC article.
- High burden of polypharmacy and comorbidity in persons with psoriatic arthritis: an analysis of claims data, stratified by age and sex. Albrecht K, Regierer AC, Strangfeld A, Marschall U, Callhoff J. RMD Open. 2023 Mar;9(1):e002960. doi: 10.1136/rmdopen-2022-002960. PMID: 36894195 Free PMC article.
- The Sensitivity to Change of the ASAS Health Index in an Observational Real-Life Cohort Study. Regierer AC, Weiß A, Kiltz U, Sieper J, Schwarze I, Bohl-Bühler M, Kellner H, Poddubnyy D, Zink A, Braun J, Listing J, Strangfeld A. J Rheumatol. 2023 Feb;50(2):185-191. doi: 10.3899/jrheum.220212. Epub 2022 Aug 1. PMID: 35914790
- [Systematic review to estimate the prevalence of inflammatory rheumatic diseases in Germany]. Albrecht K, Binder S, Minden K, Poddubnyy D, Regierer AC, Strangfeld A, Callhoff J. Z Rheumatol. 2023 Feb 7. doi: 10.1007/s00393-022-01302-5. Online ahead of print. PMID: 36749363 English.
- TNFi is associated with positive outcome, but JAKi and rituximab are associated with negative outcome of SARS-CoV-2 infection in patients with RMD. Regierer AC, Hasseli R, Schäfer M, Hoyer BF, Krause A, Lorenz HM, Pfeil A, Richter J, Schmeiser T, Schulze-Koops H, Strangfeld A, Voll RE, Specker C, Mueller-Ladner U. RMD Open. 2021 Oct;7(3):e001896. doi: 10.1136/rmdopen-2021-001896. PMID: 34670840 Free PMC article.
- Implementing an automated monitoring process in a digital, longitudinal observational cohort study. Lindner L, Weiß A, Reich A, Kindler S, Behrens F, Braun J, Listing J, Schett G, Sieper J, Strangfeld A, Regierer AC. Arthritis Res Ther. 2021 Jul 7;23(1):181. doi: 10.1186/s13075-021-02563-2. PMID: 34233730 Free PMC article.
- [German registry www.Covid19-Rheuma.de : Status report after 1 year of the pandemic]. Hasseli R, Pfeil A, Hoyer BF, Lorenz HM, Regierer AC, Richter JG, Schmeiser T, Strangfeld A, Voll RE, Krause A, Schulze-Koops H, Müller-Ladner U, Specker C. Z Rheumatol. 2021 Sep;80(7):641-646. doi: 10.1007/s00393-021-01034-y. Epub 2021 Jul 1. PMID: 34196793 Free PMC article. German.
- Older age, comorbidity, glucocorticoid use and disease activity are risk factors for COVID-19 hospitalisation in patients with inflammatory rheumatic and musculoskeletal diseases. Hasseli R, Mueller-Ladner U, Hoyer BF, Krause A, Lorenz HM, Pfeil A, Richter J, Schäfer M, Schmeiser T, Strangfeld A, Schulze-Koops H, Voll RE, Specker C, Regierer AC. RMD Open. 2021 Jan;7(1):e001464. doi: 10.1136/rmdopen-2020-001464. PMID: 33479021 Free PMC article.
- National registry for patients with inflammatory rheumatic diseases (IRD) infected with SARS-CoV-2 in Germany (ReCoVery): a valuable mean to gain rapid and reliable knowledge of the clinical course of SARS-CoV-2 infections in patients with IRD. Hasseli R, Mueller-Ladner U, Schmeiser T, Hoyer BF, Krause A, Lorenz HM, Regierer AC, Richter JG, Strangfeld A, Voll RE, Pfeil A, Schulze-Koops H, Specker C. RMD Open. 2020 Sep;6(2):e001332. doi: 10.1136/rmdopen-2020-001332. PMID: 32878994 Free PMC article.
- [RABBIT-SpA: a new disease register for axial spondyloarthritis and psoriatic arthritis]. Regierer AC, Weiß A, Baraliakos X, Zink A, Listing J, Strangfeld A. Z Rheumatol. 2020 Mar;79(2):135-142. doi: 10.1007/s00393-019-0613-z. PMID: 30874933 German.
- Spectrum of lymphomas across different drug treatment groups in rheumatoid arthritis: a European registries collaborative project. Mercer LK, Regierer AC, Mariette X, Dixon WG, Baecklund E, Hellgren K, Dreyer L, Hetland ML, Cordtz R, Hyrich K, Strangfeld A, Zink A, Canhao H, Hernandez MV, Tubach F, Gottenberg JE, Morel J, Zavada J, Iannone F, Askling J, Listing J. Ann Rheum Dis. 2017 Dec;76(12):2025-2030. doi: 10.1136/annrheumdis-2017-211623. Epub 2017 Aug 19. PMID: 28822981 Free PMC article.
