Validation of the Lupus Low Disease Activity State (LLDAS) in the Asia Pacific Region

NCT ID: NCT03138941

Last Updated: 2024-12-12

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

5000 participants

Study Classification

OBSERVATIONAL

Study Start Date

2013-09-01

Study Completion Date

2032-12-31

Brief Summary

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Lupus Low Disease Activity State (LLDAS) study is an international, multi-centre prospective study, developed by the Asia Pacific Lupus Collaboration (APLC) to investigate whether the attainment of LLDAS is associated with improved outcomes in patients with Systemic Lupus Erythematosus (SLE).

SLE, or lupus, is the archetypal multisystem autoimmune disease, with an estimated incidence of 5-50 cases per 100,000 people. Patients with SLE, usually young women, suffer a marked loss of life expectancy, and severe morbidity, due to a heterogeneous range of clinical manifestations caused by autoimmune-mediated inflammation of multiple organs. The most severe manifestations of SLE are the accrual of irreversible organ damage, especially renal and central nervous system (CNS) involvement. As there is no effective targeted monotherapy for SLE, patients also suffer severe toxicity from the use of glucocorticoids and broad-spectrum immunosuppressive therapies. Despite combination therapy with current drugs, many studies show that the majority of patients suffer inadequate disease control and inexorably accrue permanent organ damage over time.

The diversity of clinical features of active SLE has made quantification of disease activity problematic. Although there are a number of published systems in use to measure SLE disease activity, there are widely acknowledged problems with these instruments. Published definitions of remission are so stringent that they are met by less than 5% of patients. This lead to the realisation that rather than lupus remission, a lupus low disease activity state target may be more feasible, and that patients with low disease activity are more homogeneous than patients with active disease. Thus, the development of a definition of lupus low disease activity, which is feasible and has face validity, escapes the complexity of attempts to quantify heterogeneous states of active disease.

In this study, the investigators will prospectively collect longitudinal data on consecutive SLE patients at each centre to evaluate the LLDAS definition. Protection from organ damage accrual as the primary endpoint.

Detailed Description

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In this study, patients with SLE will be followed for \~ 5 years. Regular recordings of the data needed to score LLDAS (disease activity and treatment domains, see Franklyn L et al, Ann Rheum Dis 2016) will be collected, as well as annual recording of lupus-related damage using the SLICC\_ACR Damage Index (SDI) and quality of life using the Short Form 36 version 2 (SF36v2).

At conclusion of primary data collection, the associate of LLDAS attainment, or sustained attainment, with protection from organ damage accrual will be ascertained.

Conditions

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Systemic Lupus Erythematosus

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Eligibility Criteria

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Inclusion Criteria

* All patients have to meet either the 1997 American College of Rheumatology (ACR) Modified Classification Criteria for SLE, with at least four of the 11 items; or alternatively, fulfil the Systemic Lupus International Collaborating Clinics (SLICC) 2012 Classification Criteria, with at least four of the 17 items (at least one clinical and one immunological criterion) or with lupus nephritis in the presence of at least one immunological criteria. Patients can be either newly diagnosed or longstanding lupus patients.

All patients must be over the age of 18 and competent to provide written consent.

Exclusion Criteria

* Patients less than 18 years of age and patients who are unable to consent are excluded from the study.
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Flinders Medical Centre, Adelaide, AUSTRALIA

UNKNOWN

Sponsor Role collaborator

St. Vincent's Hospital, Melbourne, AUSTRALIA

UNKNOWN

Sponsor Role collaborator

Royal Adelaide Hospital, Adelaide, AUSTRALIA

UNKNOWN

Sponsor Role collaborator

University of New South Wales, Sydney, AUSTRALIA

UNKNOWN

Sponsor Role collaborator

People's Hospital, Peking University Health Science Center, Beijing, CHINA

UNKNOWN

Sponsor Role collaborator

Peking University First Hospital, Beijing, CHINA

UNKNOWN

Sponsor Role collaborator

The University of Hong Kong, HONG KONG

UNKNOWN

Sponsor Role collaborator

University of Padjadjaran, Bandung, INDONESIA

UNKNOWN

Sponsor Role collaborator

Tokyo Women's Medical University, JAPAN

UNKNOWN

Sponsor Role collaborator

University of Occupational and Environmental Health, JAPAN

UNKNOWN

Sponsor Role collaborator

Keio University, JAPAN

UNKNOWN

Sponsor Role collaborator

Hanyang University Hospital for Rheumatic Diseases, REPUBLIC OF KOREA

UNKNOWN

Sponsor Role collaborator

University of Santo Tomas Hospital, Philippines

OTHER

Sponsor Role collaborator

National University Hospital, Singapore

OTHER

Sponsor Role collaborator

Tan Tock Seng Hospital

OTHER

Sponsor Role collaborator

Chang Gung Memorial Hospital

OTHER

Sponsor Role collaborator

Taichung Veterans General Hospital

OTHER

Sponsor Role collaborator

Chiang Mai University Hospital, THAILAND

UNKNOWN

Sponsor Role collaborator

Middlemore Hospital, New Zealand

OTHER

Sponsor Role collaborator

North Shore Hospital, Auckland, NEW ZEALAND

UNKNOWN

Sponsor Role collaborator

Auckland District Health Board, Auckland, NEW ZEALAND

UNKNOWN

Sponsor Role collaborator

Teaching Hospital Kandy, SRI LANKA

UNKNOWN

Sponsor Role collaborator

University of the Philippines, Philippines

UNKNOWN

Sponsor Role collaborator

Monash University

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Eric Morand

Role: STUDY_CHAIR

Monash University

Locations

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Rheumatology Unit, Royal Adelaide Hospital

Adelaide, South Australia, Australia

Site Status RECRUITING

Department of Rheumatology, Flinders Medical Centre

Adelaide, South Australia, Australia

Site Status RECRUITING

School of Clinical Sciences at Monash Health, Faculty of Medicine, Nursing & Health Sciences

Clayton, Victoria, Australia

Site Status RECRUITING

Department of Rheumatology, St Vincent's Hospital (Melbourne)

Fitzroy, Victoria, Australia

Site Status RECRUITING

Department of Rheumatology and Immunology, People's Hospital Peking University Health Science Center

Beijing, Western District, China

Site Status RECRUITING

Rheumatology and Immunology department, Peking University First Hospital

Beijing, Xicheng District, China

Site Status RECRUITING

Division of Rheumatology & Clinical Immunology, Department of Medicine, Queen Mary Hospital, the University of Hong Kong

Pok Fu Lam, , Hong Kong

Site Status ACTIVE_NOT_RECRUITING

Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Padjadjaran University/ Hasan Sadikin General Hospital

Bandung, West Java, Indonesia

Site Status RECRUITING

The First Department of Internal Medicine, School of Medicine, University of Occupational and Environmental Health

Kitakyushu, , Japan

Site Status RECRUITING

Division of Rheumatology, Department of Internal Medicine, School of Medicine, Keio University

Tokyo, , Japan

Site Status RECRUITING

Institute of Rheumatology, Tokyo Women's Medical University

Tokyo, , Japan

Site Status RECRUITING

Joint and Bone Center, University of Santo Tomas Hospital

Manila, , Philippines

Site Status RECRUITING

University of the Philippines

Quezon City, , Philippines

Site Status RECRUITING

Rheumatology Division, University Medical Cluster, National University Hospital

Singapore, , Singapore

Site Status RECRUITING

Department of Rheumatology, Allergy & Immunology, Tan Tock Seng Hospital

Tan Tock Seng, , Singapore

Site Status RECRUITING

Department of Rheumatology, Hanyang University Hospital for Rheumatic Diseases

Seoul, , South Korea

Site Status RECRUITING

Division of Nephrology, Teaching Hospital Kandy, Sri Lanka

Kandy, , Sri Lanka

Site Status RECRUITING

Department of Rheumatology, Allergy and Immunology Chang Gung Memorial Hospital Chang Gung University

Guishan, Taoyuan County, Taiwan

Site Status RECRUITING

Division of Allergy, Immunology and Rheumatology, Taichung Veterans General Hospital

Taichung, , Taiwan

Site Status RECRUITING

Division of Rheumatology, Department of Internal Medicine, Faculty of Medicine, Chiang Mai University Hospital

Chiang Mai, Muang District, Thailand

Site Status RECRUITING

Countries

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India Malaysia United Arab Emirates Australia China Hong Kong Indonesia Japan Philippines Singapore South Korea Sri Lanka Taiwan Thailand

Central Contacts

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Eric F Morand

Role: CONTACT

Phone: + 61 3 8572 2650

Email: [email protected]

Rangi K KANDANE-RATHNAYAKE

Role: CONTACT

Phone: + 61 3 8572 2561

Email: [email protected]

Facility Contacts

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Fiona Goldblatt

Role: primary

Fiona Goldblatt

Role: primary

Eric Morand

Role: primary

Alberta Hoi

Role: backup

Mandana Nikpour

Role: primary

Zhan Guo Li

Role: primary

Yuan An

Role: backup

Zhuoli Zhang

Role: primary

Yanjie Hao

Role: backup

Laniyati Hamijoyo

Role: primary

Yoshiya Tanaka

Role: primary

Tsutomu Takeuchi

Role: primary

Masayoshi Harigai

Role: primary

Yasuhiro Katsumata

Role: backup

Sandra Navarra

Role: primary

Michael Tee

Role: primary

Aisha Lateef

Role: primary

Madelynn Chan

Role: primary

Sang-Cheol Bae

Role: primary

BMDB Basnayake, MD

Role: primary

Shue Fen Luo

Role: primary

Yeong-Jian Wu

Role: backup

Yi-Hsing Chen

Role: primary

Worawit Louthrenoo

Role: primary

References

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Golder V, Huq M, Franklyn K, Calderone A, Lateef A, Lau CS, Lee ALH, Navarra STV, Godfrey T, Oon S, Hoi AYB, Morand EF, Nikpour M. Does expert opinion match the operational definition of the Lupus Low Disease Activity State (LLDAS)? A case-based construct validity study. Semin Arthritis Rheum. 2017 Jun;46(6):798-803. doi: 10.1016/j.semarthrit.2017.01.007. Epub 2017 Jan 18.

Reference Type BACKGROUND
PMID: 28216192 (View on PubMed)

Golder V, Kandane-Rathnayake R, Hoi AY, Huq M, Louthrenoo W, An Y, Li ZG, Luo SF, Sockalingam S, Lau CS, Mok MY, Lateef A, Franklyn K, Morton S, Navarra ST, Zamora L, Wu YJ, Hamijoyo L, Chan M, O'Neill S, Goldblatt F, Nikpour M, Morand EF; Asia-Pacific Lupus Collaboration. Association of the lupus low disease activity state (LLDAS) with health-related quality of life in a multinational prospective study. Arthritis Res Ther. 2017 Mar 20;19(1):62. doi: 10.1186/s13075-017-1256-6.

Reference Type BACKGROUND
PMID: 28320433 (View on PubMed)

Golder V, Kandane-Rathnayake R, Hoi AY, Huq M, Louthrenoo W, An Y, Li ZG, Luo SF, Sockalingam S, Lau CS, Lee AL, Mok MY, Lateef A, Franklyn K, Morton S, Navarra ST, Zamora L, Wu YJ, Hamijoyo L, Chan M, O'Neill S, Goldblatt F, Morand EF, Nikpour M; Asia-Pacific Lupus Collaboration. Frequency and predictors of the lupus low disease activity state in a multi-national and multi-ethnic cohort. Arthritis Res Ther. 2016 Nov 9;18(1):260. doi: 10.1186/s13075-016-1163-2.

Reference Type BACKGROUND
PMID: 27829463 (View on PubMed)

Franklyn K, Lau CS, Navarra SV, Louthrenoo W, Lateef A, Hamijoyo L, Wahono CS, Chen SL, Jin O, Morton S, Hoi A, Huq M, Nikpour M, Morand EF; Asia-Pacific Lupus Collaboration. Definition and initial validation of a Lupus Low Disease Activity State (LLDAS). Ann Rheum Dis. 2016 Sep;75(9):1615-21. doi: 10.1136/annrheumdis-2015-207726. Epub 2015 Oct 12.

Reference Type BACKGROUND
PMID: 26458737 (View on PubMed)

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, Lau CS, Hoi A, Nikpour M, Morand EF. Development of the Asia Pacific Lupus Collaboration cohort. Int J Rheum Dis. 2019 Mar;22(3):425-433. doi: 10.1111/1756-185X.13431. Epub 2018 Nov 5.

Reference Type BACKGROUND
PMID: 30398013 (View on PubMed)

Golder V, Kandane-Rathnayake R, Huq M, Nim HT, Louthrenoo W, Luo SF, Wu YJ, Lateef A, Sockalingam S, Navarra SV, Zamora L, Hamijoyo L, Katsumata Y, Harigai M, Chan M, O'Neill S, Goldblatt F, Lau CS, Li ZG, Hoi A, Nikpour M, Morand EF; Asia-Pacific Lupus Collaboration. Lupus low disease activity state as a treatment endpoint for systemic lupus erythematosus: a prospective validation study. Lancet Rheumatol. 2019 Oct;1(2):e95-e102. doi: 10.1016/S2665-9913(19)30037-2. Epub 2019 Sep 6.

Reference Type BACKGROUND
PMID: 38229349 (View on PubMed)

Golder V, Kandane-Rathnayake R, Huq M, Louthrenoo W, Luo SF, Wu YJ, Lateef A, Sockalingam S, Navarra SV, Zamora L, Hamijoyo L, Katsumata Y, Harigai M, Chan M, O'Neill S, Goldblatt F, Lau CS, Li ZG, Hoi A, Nikpour M, Morand EF; Asia Pacific Lupus Collaboration. Evaluation of remission definitions for systemic lupus erythematosus: a prospective cohort study. Lancet Rheumatol. 2019 Oct;1(2):e103-e110. doi: 10.1016/S2665-9913(19)30048-7. Epub 2019 Sep 25.

Reference Type BACKGROUND
PMID: 38229337 (View on PubMed)

Golder V, Kandane-Rathnayake R, Li N, Louthrenoo W, Chen YH, Cho J, Lateef A, Hamijoyo L, Luo SF, Wu YJ, Navarra SV, Zamora L, Li Z, Sockalingam S, Katsumata Y, Harigai M, Hao Y, Zhang Z, Basnayake D, Chan M, Kikuchi J, Takeuchi T, Bae SC, Goldblatt F, Oon S, O'Neill S, Ng K, Law A, Tugnet N, Kumar S, Tee C, Tee M, Ohkubo N, Tanaka Y, Lau CS, Hoi A, Nikpour M, Morand EF; Asia Pacific Lupus Collaboration. Association of sustained lupus low disease activity state with improved outcomes in systemic lupus erythematosus: a multinational prospective cohort study. Lancet Rheumatol. 2024 Aug;6(8):e528-e536. doi: 10.1016/S2665-9913(24)00121-8. Epub 2024 Jun 11.

Reference Type DERIVED
PMID: 38876129 (View on PubMed)

Golder V, Kandane-Rathnayake R, Louthrenoo W, Chen YH, Cho J, Lateef A, Hamijoyo L, Luo SF, Wu YJ, Navarra SV, Zamora L, Li Z, Sockalingam S, Katsumata Y, Harigai M, Hao Y, Zhang Z, Basnayake BMDB, Chan M, Kikuchi J, Takeuchi T, Bae SC, Oon S, O'Neill S, Goldblatt F, Ng KPL, Law A, Tugnet N, Kumar S, Tee C, Tee M, Ohkubo N, Tanaka Y, Lau CS, Nikpour M, Hoi A, Morand EF; Asia Pacific Lupus Collaboration. Comparison of Attainment and Protective Effects of Lupus Low Disease Activity State in Patients With Newly Diagnosed Versus Established Systemic Lupus Erythematosus. J Rheumatol. 2024 Aug 1;51(8):790-797. doi: 10.3899/jrheum.2023-0900.

Reference Type DERIVED
PMID: 38490668 (View on PubMed)

Kandane-Rathnayake R, Golder V, Louthrenoo W, Chen YH, Cho J, Lateef A, Hamijoyo L, Luo SF, Wu YJ, Navarra SV, Zamora L, Li Z, Sockalingam S, Katsumata Y, Harigai M, Hao Y, Zhang Z, Basnayake BMDB, Chan M, Kikuchi J, Takeuchi T, Bae SC, Oon S, O'Neill S, Goldblatt F, Ng KPL, Law A, Tugnet N, Kumar S, Tee C, Tee M, Ohkubo N, Tanaka Y, Yu D, Karyekar CS, Sing Lau C, Monk JA, Nikpour M, Hoi A, Morand EF; Asia-Pacific Lupus Collaboration. Lupus low disease activity state and remission and risk of mortality in patients with systemic lupus erythematosus: a prospective, multinational, longitudinal cohort study. Lancet Rheumatol. 2022 Dec;4(12):e822-e830. doi: 10.1016/S2665-9913(22)00304-6. Epub 2022 Oct 22.

Reference Type DERIVED
PMID: 38261390 (View on PubMed)

Related Links

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Other Identifiers

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APLC LLDAS Study

Identifier Type: -

Identifier Source: org_study_id