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SP0032 Collaboration between Research and Patient Organisations: Improving Patient Care through The Danish Rheumatologic Biobank
  1. B. Glintborg1,2,3
  1. 1Department of Rheumatology, Gentofte University Hospital, Hellerup
  2. 2The Danish Rheumatologic Biobank
  3. 3The DANBIO registry, Rigshospitalet, Glostrup, Copenhagen, Denmark

Abstract

Within the field of rheumatology, the number of available medical treatments is steadily increasing. During the last decades the biological disease modifying drugs (bDMARDs) have significantly improved outcomes for patients otherwise refractory to treatment. However, adverse effects, insufficient drug response and subsequent switching from one drug to another remain a significant problem for numerous patients in daily clinical practice. Within the field of oncology, personalized treatment strategies have come a long way. But for patients with inflammatory rheumatic diseases, the ability to choose the right drug for the right patient is still limited or non-existing. International treatment guidelines all follow a “one-size-fits-all” or “trial-and-error” strategy.

The nationwide Danish Rheumatologic Biobank was established in year 2015 and is funded by the patient organization The Danish Rheumatism Association and the public hospital owners (Danish Regions). The aim of the Danish Rheumatologic Biobank is to promote the identification of new biomarkers for personalised treatment of patients with inflammatory rheumatic diseases. Biological samples (blood, synovial fluid etc.) are collected after written informed patient consent for specific research projects. Corresponding high-quality clinical data are registered prospectively in the nationwide quality and research registry, DANBIO. The treating physician registers patient demographics, previous and current treatment (DMARDs) including reasons for withdrawal, and physician-reported outcomes (clinical characteristics, treatment response, imaging) whereas the patient provides patient-reported outcomes (functional status, pain/fatigue/global scores).

Danish Rheumatologic Biobank exemplifies a unique collaboration between patients and researchers, patient organisations and hospital owners aiming to pave the road for personalized treatment of patients with inflammatory rheumatic diseases. We expect the Danish Rheumatologic Biobank to facilitate high quality research and improved patient care within the field of rheumatology.

During this lecture the rationale, infrastructure and status for DRB will be discussed.

Acknowledgements: The Danish Rheumatism Association and the Danish Regions for funding. The DANBIO registry for hosting clinical data. The Danish Departments of Rheumatology and Biochemistry for participating in DRB sample collection. Thanks to professor Merete Lund Hetland, the main initiator of DRB and the working group behind DRB: Estrid Høgdall, Tina Kringelbach and Julia Sidenius Johansen.

Disclosure of Interest None declared

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