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Development of Instruments and Surveys (170) Research Instruments, Questionnaires, and Tools (1191) Immunology, Allergy, Rheumatology (190) Patient-Reported Outcome Measures (PROMs) (473) Co-Design & Participatory Design (309) Patient-Centred Outcomes Research (50)

Published on in Vol 15 (2026)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/96022, first published .
Doctor using a tablet computer in a modern clinic

Development and Validation of the Idiopathic Multicentric Castleman Disease Symptom Burden Scale (ISBUS): Protocol for an International Multistage Mixed Methods Study

Development and Validation of the Idiopathic Multicentric Castleman Disease Symptom Burden Scale (ISBUS): Protocol for an International Multistage Mixed Methods Study

Authors of this article:

Philip A Powell1 Author Orcid Image ;   Anju Keetharuth1 Author Orcid Image ;   Sé Maria Frances1 Author Orcid Image ;   Jill Carlton1 Author Orcid Image ;   Kelly Makarounas-Kirchmann2 Author Orcid Image ;   Antonio Adolfo Guerra Soares Brandão3 Author Orcid Image ;   Karthik Ramasamy4, 5 Author Orcid Image ;   Francis Shupo6 Author Orcid Image ;   Kelley C Dacus7 Author Orcid Image ;   Corey Casper8, 9 Author Orcid Image ;   David C Fajgenbaum10 Author Orcid Image ;   Yeow Goh11 Author Orcid Image ;   Frits van Rhee12 Author Orcid Image ;   Pier Luigi Zinzani13, 14 Author Orcid Image ;   Éric Oksenhendler15, 16 Author Orcid Image ;   Lu Zhang17 Author Orcid Image ;   Sudipto Mukherjee18 Author Orcid Image
Article Authors Cited by Tweetations Metrics

Philip A Powell   1 , PhD ;   Anju Keetharuth   1 , PhD ;   Sé Maria Frances   1 , PhD ;   Jill Carlton   1 , PhD ;   Kelly Makarounas-Kirchmann   2 , MEC ;   Antonio Adolfo Guerra Soares Brandão   3 , MD ;   Karthik Ramasamy   4, 5 , MD, PhD ;   Francis Shupo   6 , MSc ;   Kelley C Dacus   7 , PharmD ;   Corey Casper   8, 9 , MD, MPH ;   David C Fajgenbaum   10 , MD, MSc ;   Yeow Goh   11 , MBBS ;   Frits van Rhee   12 , MD, PhD ;   Pier Luigi Zinzani   13, 14 , MD, PhD ;   Éric Oksenhendler   15, 16 , MD ;   Lu Zhang   17 , MD ;   Sudipto Mukherjee   18 , MD, PhD

1 School of Medicine and Population Health, University of Sheffield, Sheffield, England, United Kingdom

2 KMC Health Care, Melbourne, Australia

3 Hospital BP – A Beneficência Portuguesa de São Paulo, São Paulo, Brazil

4 Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, Oxford, England, United Kingdom

5 Oxford University Hospitals NHS Trust, Oxford, England, United Kingdom

6 Recordati Rare Diseases, Hemel Hempstead, England, United Kingdom

7 Recordati Rare Diseases Inc., Bridgewater, NJ, United States

8 Banner Health, Phoenix, AZ, United States

9 College of Medicine, University of Arizona, Phoenix, AZ, United States

10 University of Pennsylvania, Philadelphia, PA, United States

11 Singapore General Hospital, Singapore, SG.01, Singapore

12 University of Arkansas for Medical Sciences, Little Rock, AR, United States

13 Istituto di Ematologia “Seràgnoli”, IRCCS Azienda Ospedaliero-Universitaria di Bologna, Bologna, Italy

14 Dipartimento di Scienze Mediche e Chirurgiche, University of Bologna, Bologna, Emilia-Romagna, Italy

15 Université de Paris, Paris, Île-de-France, France

16 Department of Clinical Immunology, Hôpital Saint-Louis, Paris, Île-de-France, France

17 Department of Hematology, Peking Union Medical College Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College, Beijing, Beijing, China

18 Department of Hematology and Medical Oncology, Cleveland Clinic, Cleveland, OH, United States

Corresponding Author:

  • Philip A Powell, PhD
  • School of Medicine and Population Health
  • University of Sheffield
  • Regent Court
  • 30 Regent Street
  • Sheffield, England S1 4DA
  • United Kingdom
  • Phone: 44 1142220794
  • Email: philipapowell2@gmail.com