TY - JOUR
T1 - Development of the Asia Pacific Lupus Collaboration cohort
AU - Kandane-Rathnayake, Rangi
AU - Golder, Vera
AU - Louthrenoo, Worawit
AU - Luo, Shue Fen
AU - Jan Wu, Yeong Jian
AU - Li, Zhanguo
AU - An, Yuan
AU - Lateef, Aisha
AU - Sockalingam, Sargunan
AU - Navarra, Sandra V.
AU - Zamora, Leonid
AU - Hamijoyo, Laniyati
AU - Katsumata, Yasuhiro
AU - Harigai, Masayoshi
AU - Chan, Madelynn
AU - O’Neill, Sean
AU - Goldblatt, Fiona
AU - Hao, Yanjie
AU - Zhang, Zhuoli
AU - Al-Saleh, Jamal
AU - Khamashta, Munther
AU - Takeuchi, Tsutomu
AU - Tanaka, Yoshiya
AU - Bae, Sang Cheol
AU - Lau, Chak Sing
AU - Hoi, Alberta
AU - Nikpour, Mandana
AU - Morand, Eric F.
N1 - Funding Information:
We thank all the participants in the APLC for their participation and all the data collectors across the region for their ongoing support for the study. The initial funding for the generation of the APLC concept came from the host universities who employ the founders. GlaxoSmithKline provided the first direct funding to the APLC in support of establishing the cohort, and several other companies including AstraZeneca, Bristol-Myers Squibb, Janssen Research and Development, LLC and UCB Biopharma SPRL have funded the APLC via unrestricted grants or specific project funding. These funding bodies have no role in study design and publication of study findings, and have no access to raw data. Funds are used to employ a Data Manager responsible for data collection and analysis, and some funds are shared among the institutions to support data collection.
Publisher Copyright:
© 2018 Asia Pacific League of Associations for Rheumatology and John Wiley & Sons Australia, Ltd
PY - 2019/3
Y1 - 2019/3
N2 - 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.
AB - 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.
KW - Asia Pacific region
KW - lupus low disease activity state
KW - systemic lupus erythematous
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U2 - 10.1111/1756-185X.13431
DO - 10.1111/1756-185X.13431
M3 - Article
C2 - 30398013
AN - SCOPUS:85055941968
SN - 1756-1841
VL - 22
SP - 425
EP - 433
JO - APLAR Journal of Rheumatology
JF - APLAR Journal of Rheumatology
IS - 3
ER -