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 - Sing Lau, Chak
AU - Hoi, Alberta
AU - Nikpour, Mandana
AU - Morand, Eric F.
PY - 2019/3/1
Y1 - 2019/3/1
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
UR - http://www.scopus.com/inward/record.url?scp=85055941968&partnerID=8YFLogxK
U2 - 10.1111/1756-185X.13431
DO - 10.1111/1756-185X.13431
M3 - Article
AN - SCOPUS:85055941968
VL - 22
SP - 425
EP - 433
JO - International Journal of Rheumatic Diseases
JF - International Journal of Rheumatic Diseases
SN - 1756-1841
IS - 3
ER -