British Society for Rheumatology > Knowledge > Registers > Psoriatic Arthritis register

Psoriatic Arthritis register

Knowledge * Registers * Psoriatic Arthritis register

We are pleased to announce the launch of the Psoriatic Arthritis register. This register is being run by the University of Aberdeen on behalf of the British Society for Rheumatology. The register is aligned to other international registries with Psoriatic Arthritis patients in the EU and North America. Preparatory work for this study is underway, and it is anticipated that recruitment will open in Autumn 2018.

Project Overview:

The overall aim of the register is to provide ‘real-world’ data, with respect to:

  • The impact of Psoriatic Arthritis on the individual, including function, work, quality of life and economic impact
  • The natural history of Psoriatic Arthritis, including clinical, social and work outcomes in the medium- to long-term and the impact of disease phenotype on disease outcome
  • The use of novel pharmacological agents (including biologic DMARDs, biosimilar DMARDs and targeted synthetic DMARDs), their use, effectiveness and predictors (including biomolecular predictors) of treatment response.

In addition, the study will:

  • Provide health economic data relevant to the evaluation of cost-effectiveness of different therapy options; and
  • Provide the infrastructure to support the collection, analysis and reporting of adverse events amongst patients on novel pharmacological agents.

Patients who meet the CASPAR classification criteria for PsA will be eligible if they:

  • Are starting a biologic-original, biosimilar, or targeted synthetic disease-modifying anti-rheumatic drug (boDMARD, bsDMARD, or tsDMARD, respectively) that has been approved or recommended for the treatment of PsA in the United Kingdom, having never previously received that particular agent; or
  • Have never received a boDMARD, bsDMARD, or tsDMARD agent.

These groups comprise the exposed cohort and comparison cohort, respectively.  Patients in the exposed cohort will be entered into drug‐specific sub‐cohorts, depending on which agent they are commencing.  Standardised questionnaires are completed by the participants, and clinical data will be obtained from the rheumatologist and / or the patients’ medical notes. Once recruited, participants remain eligible for follow-up irrespective of any changes to their therapy.

The study will evaluate the long-term course of Psoriatic Arthritis and, patients will be followed up annually, comprising patient and treatment characteristics, clinical parameters, patient-defined benefit, quality of life and adverse events. In addition, patients starting a boDMARD, bsDMARD, or tsDMARD agent (either at recruitment or subsequently) will be followed up three and six months after the commencement of that therapy.  Switching between cohorts after recruitment is permissible and a patient’s follow-up schedule will be ‘reset’ in the event of any major change of therapy. 

Please contact us to express your interest in recruiting to this register.

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