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Challenges in optimising patient participation in research: do patients participating in meetings represent the actual patient population with Behçet’s syndrome?
  1. Sıtkı Safa Taflan1,
  2. Sinem Nihal Esatoglu2,
  3. Yesim Ozguler2,
  4. Berna Yurttas2,
  5. Melike Melikoglu2,
  6. Gulen Hatemi2
  1. 1Cerrahpasa Medical School, Istanbul University-Cerrahpasa, Istanbul, Turkey
  2. 2Cerrahpasa Medical School, Department of Internal Medicine, Division of Rheumatology, Istanbul University-Cerrahpasa, Istanbul, Turkey
  1. Correspondence to Dr Gulen Hatemi, Cerrahpasa Medical School, Department of Internal Medicine, Division of Rheumatology, Istanbul University-Cerrahpasa, Istanbul 34098, Turkey; gulenhatemi{at}yahoo.com

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The importance of patient involvement in healthcare research is increasingly emphasised. Patients participate as research partners in designing studies and development of management recommendations, measurement tools and outcome measures.1 Both Outcome Measures in Rheumatology (OMERACT) and the British Medical Journal encourage patient involvement in various aspects of research.2 3 However, ensuring representation of the general patient population by specific patient groups may be challenging for multisystem diseases with heterogeneous phenotype. This is important for ensuring a successful structural involvement of patients in research, without over/underrepresentation of certain groups based on demographic or clinical features. Behçet’s syndrome (BS) is a multisystem variable vessel vasculitis that shows substantial heterogeneity in clinical findings and disease course.

We aimed to evaluate whether patients with BS participating in a patient convention represent the actual patient population attending the clinic. A questionnaire was applied to 104 patients with BS (Meeting group) attending the patient convention, which was held during the Cerrahpasa Behçet’s Disease Symposium in Istanbul in February 2020. Patients had been invited to …

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Footnotes

  • Handling editor Josef S Smolen

  • Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.

  • Competing interests All authors have completed and submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. SNE has received honorariums for presentations from UCB Pharma, Roche, Pfizer, and Merck Sharp Dohme. YO has received honorariums for presentations from UCB Pharma, Novartis, and Pfizer. GH has received grant/research support from Celgene and has served as a speaker for AbbVie, Celgene, Novartis and UCB Pharma.

  • Patient and public involvement Çetin Ezber has helped with the planning and application of the questionnaires.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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