Development of the Asia Pacific Lupus Collaboration cohort

Rangi Kandane-Rathnayake, Vera Golder, Worawit Louthrenoo, Shue Fen Luo, Yeong Jian Jan Wu, Zhanguo Li, Yuan An, Aisha Lateef, Sargunan Sockalingam, Sandra V. Navarra, Leonid Zamora, Laniyati Hamijoyo, Yasuhiro Katsumata, Masayoshi Harigai, Madelynn Chan, Sean O’Neill, Fiona Goldblatt, Yanjie Hao, Zhuoli Zhang, Jamal Al-SalehMunther Khamashta, Tsutomu Takeuchi, Yoshiya Tanaka, Sang Cheol Bae, Chak Sing Lau, Alberta Hoi, Mandana Nikpour, Eric F. Morand

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Abstract

Aim: The aim of this manuscript is to describe the development of the Asia Pacific Lupus Collaboration (APLC) cohort. Method: The APLC cohort is an ongoing, prospective longitudinal cohort. Adult patients who meet either the American College of Rheumatology (ACR) Modified Classification Criteria for systemic lupus erythematosus (SLE), or the Systemic Lupus International Collaborating Clinics (SLICC) Classification Criteria, and provide informed consent are recruited into the cohort. Patients are routinely followed up at 3- to 6-monthly intervals. Information on demographics, clinical manifestations, treatment, pathology results, outcomes, and patient-reported quality of life (Short-form 36 version 2) are collected using a standardized case report form. Each site is responsible for obtaining local ethics and governance approval, patient recruitment, data collection, and data transfer into a centralized APLC database. Results: The latest APLC cohort comprises 2160 patients with >12 000 visits from Australia, China, Hong Kong, Indonesia, Japan, Malaysia, Philippines, Singapore, Taiwan and Thailand. The APLC has proposed the Lupus Low Disease Activity State (LLDAS) as a treat-to-target (T2T) endpoint, and reported several retrospective and cross-sectional analyses consistent with the validity of LLDAS. Longitudinal validation of LLDAS as a T2T endpoint is currently underway. Conclusion: The APLC cohort is one of the largest contemporary SLE patient cohorts in the world. It is the only cohort with substantial representation of Asian patients. This cohort represents a unique resource for future clinical research including evaluation of other endpoints and quality of care.

Original languageEnglish
Pages (from-to)425-433
Number of pages9
JournalInternational Journal of Rheumatic Diseases
Volume22
Issue number3
DOIs
Publication statusPublished - 1 Mar 2019

Keywords

  • Asia Pacific region
  • lupus low disease activity state
  • systemic lupus erythematous

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