Rangi Kandane-Rathnayake1, Vera Golder1, Worawit Louthrenoo2, Shue-Fen Luo3,4, Yeong-Jian Jan Wu3,4, Zhanguo Li5, Yuan An5, Aisha Lateef6, Sargunan Sockalingam7, Sandra V Navarra8, Leonid Zamora8, Laniyati Hamijoyo9, Yasuhiro Katsumata10, Masayoshi Harigai10, Madelynn Chan11, Sean O'Neill12, Fiona Goldblatt13,14, Yanjie Hao15, Zhuoli Zhang15, Jamal Al-Saleh16, Munther Khamashta16, Tsutomu Takeuchi17, Yoshiya Tanaka18, Sang-Cheol Bae19, Chak Sing Lau20, Alberta Hoi1, Mandana Nikpour21, Eric F Morand1. 1. School of Clinical Sciences at Monash Health, Monash University, Melbourne, Victoria, Australia. 2. Chiang Mai University Hospital, Chiang Mai, Thailand. 3. Chang Gung Memorial Hospital, Taipei, Taiwan. 4. Chang Gung Memorial Hospital, Keelung, Taiwan. 5. People's Hospital, Peking University Health Science Center, Beijing, China. 6. National University Hospital, Singapore, Singapore. 7. University of Malaya, Kuala Lumpur, Malaysia. 8. University of Santo Tomas Hospital, Manila, Philippines. 9. University of Padjadjaran, Indonesia. 10. Tokyo Women's Medical University, Tokyo, Japan. 11. Tan Tock Seng Hospital, Singapore, Singapore. 12. Rheumatology Liverpool Hospital, SWS Clinical School, UNSW and The Ingham Institute for Applied Medical Research, Liverpool, New South Wales, Australia. 13. Royal Adelaide Hospital, Adelaide, New South Wales, Australia. 14. Flinders Medical Centre, Adelaide, New South Wales, Australia. 15. Peking University First Hospital, Beijing, China. 16. Dubai Hospital, Dubai, United Arab Emirates. 17. Keio University School of Medicine, Tokyo, Japan. 18. University of Occupational and Environmental Health, Kitakyushu, Japan. 19. Hanyang University Hospital for Rheumatic Diseases, Seoul, South Korea. 20. University of Hong Kong, Hong Kong City, Hong Kong. 21. St. Vincent's Hospital, Melbourne, Victoria, Australia.
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.
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 SLEpatient 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.
Authors: Kimberly DeQuattro; Laura Trupin; Louise B Murphy; Stephanie Rush; Lindsey A Criswell; Cristina M Lanata; Maria Dall'Era; Patricia Katz; Jinoos Yazdany Journal: Arthritis Care Res (Hoboken) Date: 2022-04-20 Impact factor: 5.178
Authors: Ronald F van Vollenhoven; George Bertsias; Andrea Doria; David Isenberg; Eric Morand; Michelle A Petri; Bernardo A Pons-Estel; Anisur Rahman; Manuel Francisco Ugarte-Gil; Alexandre Voskuyl; Laurent Arnaud; Ian N Bruce; Ricard Cervera; Nathalie Costedoat-Chalumeau; Caroline Gordon; Frédéric A Houssiau; Marta Mosca; Matthias Schneider; Michael M Ward; Graciela Alarcon; Martin Aringer; Anka Askenase; Sang-Cheol Bae; Hendrika Bootsma; Dimitrios T Boumpas; Hermine Brunner; Ann Elaine Clarke; Cindy Coney; László Czirják; Thomas Dörner; Raquel Faria; Rebecca Fischer; Ruth Fritsch-Stork; Murat Inanc; Søren Jacobsen; David Jayne; Annegret Kuhn; Bernadette van Leeuw; Maarten Limper; Xavier Mariette; Sandra Navarra; Mandana Nikpour; Marzena Helena Olesinska; Guillermo Pons-Estel; Juanita Romero-Diaz; Blanca Rubio; Yehuda Schoenfeld; Eloisa Bonfá; Josef Smolen; Y K Onno Teng; Angela Tincani; Michel Tsang-A-Sjoe; Carlos Vasconcelos; Anne Voss; Victoria P Werth; Elena Zakharhova; Cynthia Aranow Journal: Lupus Sci Med Date: 2021-11