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-Saleh & 8 others Munther Khamashta, Tsutomu Takeuchi, Yoshiya Tanaka, Sang Cheol Bae, Chak Sing Lau, Alberta Hoi, Mandana Nikpour, Eric F. Morand

Research output: Contribution to journalArticleResearchpeer-review

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

Cite this

Kandane-Rathnayake, Rangi ; Golder, Vera ; Louthrenoo, Worawit ; Luo, Shue Fen ; Jan Wu, Yeong Jian ; Li, Zhanguo ; An, Yuan ; Lateef, Aisha ; Sockalingam, Sargunan ; Navarra, Sandra V. ; Zamora, Leonid ; Hamijoyo, Laniyati ; Katsumata, Yasuhiro ; Harigai, Masayoshi ; Chan, Madelynn ; O’Neill, Sean ; Goldblatt, Fiona ; Hao, Yanjie ; Zhang, Zhuoli ; Al-Saleh, Jamal ; Khamashta, Munther ; Takeuchi, Tsutomu ; Tanaka, Yoshiya ; Bae, Sang Cheol ; Sing Lau, Chak ; Hoi, Alberta ; Nikpour, Mandana ; Morand, Eric F. / Development of the Asia Pacific Lupus Collaboration cohort. In: International Journal of Rheumatic Diseases. 2019 ; Vol. 22, No. 3. pp. 425-433.
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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.",
keywords = "Asia Pacific region, lupus low disease activity state, systemic lupus erythematous",
author = "Rangi Kandane-Rathnayake and Vera Golder and Worawit Louthrenoo and Luo, {Shue Fen} and {Jan Wu}, {Yeong Jian} and Zhanguo Li and Yuan An and Aisha Lateef and Sargunan Sockalingam and Navarra, {Sandra V.} and Leonid Zamora and Laniyati Hamijoyo and Yasuhiro Katsumata and Masayoshi Harigai and Madelynn Chan and Sean O’Neill and Fiona Goldblatt and Yanjie Hao and Zhuoli Zhang and Jamal Al-Saleh and Munther Khamashta and Tsutomu Takeuchi and Yoshiya Tanaka and Bae, {Sang Cheol} and {Sing Lau}, Chak and Alberta Hoi and Mandana Nikpour and Morand, {Eric F.}",
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Kandane-Rathnayake, R, Golder, V, Louthrenoo, W, Luo, SF, Jan Wu, YJ, Li, Z, An, Y, Lateef, A, Sockalingam, S, Navarra, SV, Zamora, L, Hamijoyo, L, Katsumata, Y, Harigai, M, Chan, M, O’Neill, S, Goldblatt, F, Hao, Y, Zhang, Z, Al-Saleh, J, Khamashta, M, Takeuchi, T, Tanaka, Y, Bae, SC, Sing Lau, C, Hoi, A, Nikpour, M & Morand, EF 2019, 'Development of the Asia Pacific Lupus Collaboration cohort' International Journal of Rheumatic Diseases, vol. 22, no. 3, pp. 425-433. https://doi.org/10.1111/1756-185X.13431

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

In: International Journal of Rheumatic Diseases, Vol. 22, No. 3, 01.03.2019, p. 425-433.

Research output: Contribution to journalArticleResearchpeer-review

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

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JO - International Journal of Rheumatic Diseases

JF - International Journal of Rheumatic Diseases

SN - 1756-1841

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