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AntiPhospholipid Syndrome Alliance for Clinical Trials and InternatiOnal Networking (APS ACTION): 5-Year Update

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Abstract

Antiphospholipid Syndrome Alliance for Clinical Trials and International Networking (APS ACTION) is the first-ever international network created to design and conduct large-scale, multicenter clinical trials and research in persistently antiphospholipid antibody (aPL)-positive patients. Since its inception in 2010, the APS ACTION has made important strides toward our goal of international research collaboration and data sharing. Through the dedication and hard work of 50 APS ACTION members, collaborative international projects are currently underway including a multicenter web-based registry and repository of aPL-positive patients, a randomized controlled clinical trial assessing the efficacy of hydroxychloroquine for primary thrombosis prevention in persistently aPL-positive but thrombosis-free patients, standardization of aPL testing through the use of core laboratories worldwide, identification of the limitations in the existing aPL/APS literature, and conducting observational research studies to further our understanding of the disease. Thus far, APS ACTION has held annual workshops and summits with the aim of facilitating international collaboration and developing initiatives to recruit young scholars to APS research. This paper describes updates related to the organization’s structure, ongoing research efforts, and recent accomplishments and discusses future directions.

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Acknowledgments

We want to thank the APS ACTION Executive Committee members (Maria Laura Bertolaccini, Hannah Cohen, Roger Levy, Michael Lockshin, Robert Roubey, and Maria Tektonidou) for their input while preparing the manuscript; Joann Vega (APS ACTION Lead Coordinator) for her help with the administrative aspects of APS ACTION; and Ozan Unlu, MD for his help with data monitoring and analysis.

Funding and Grant Support

APS ACTION has received partial support from a private donor and APS Foundation of America. Antiphospholipid antibody kits used at core laboratories have been donated by INOVA Diagnostics and Instrumentation Laboratory. The APS ACTION registry was created using REDCAP provided by the Clinical and Translational Science Center at Weill Cornell Medical College (CTSC grant UL1 TR000457). APS ACTION also received partial support from New York Community Trust for the “Hydroxychloroquine Trial.”

Author information

Authors and Affiliations

  1. Division of Rheumatology, Immunology, and Allergy, Brigham and Women’s Hospital, Harvard Medical School, Boston, MA, USA

    Medha Barbhaiya

  2. University of São Paulo, São Paulo, Brazil

    Danieli Andrade

  3. Barbara Volcker Center for Women and Rheumatic Diseases, Hospital for Special Surgery, 535 East 70th Street, New York, NY, 10021, USA

    Doruk Erkan

  4. Hospital for Special Surgery, New York, NY, USA

    Doruk Erkan

  5. Weill Cornell Medicine, New York, NY, USA

    Doruk Erkan

Authors
  1. Medha Barbhaiya
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  2. Danieli Andrade
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  3. Doruk Erkan
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on behalf of APS ACTION

Corresponding author

Correspondence to Doruk Erkan.

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Conflict of Interest

MB reports grants from Rheumatology Research Foundation, outside the submitted work. DA declares that he has no conflicts of interest. DE reports grants from Lupus Clinical Trials Consortium, grants from New York Community Trust, grants from NIH, grants from Hospital for Special Surgery Medical Education Academy, grants and personal fees from Alexion, grants from Eli Lilly and Company, grants from EMD Serono, and grants from GSK, outside the submitted work.

Human and Animal Rights and Informed Consent

This article does not contain any studies with human or animal subjects performed by any of the authors.

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In Memorarium

It is with deep sorrow and much sympathy that we note the passing of our valued colleague and friend, Dr. Silvia Pierangeli, who was always a strong advocate and leader for APS. She was a true inspiration to us all. Her enthusiasm and collaborative energy helped drive APS and APS ACTION to where it is today. She will be missed.

Appendix: APS Action Members

Appendix: APS Action Members

Australia: Sydney (Bill Giannakopoulos, Steve Krilis); Brazil: Rio de Janeiro (Guilherme de Jesus, Roger Levy), São Paulo (Renata Rosa, Danieli Andrade); Canada: Quebec (Paul F. Fortin); China: Beijing (Zhouli Zhang); France: Nancy (Stephane Zuily, Denis Wahl); Greece: Athens (Maria Tektonidou*); Italy: Brescia (Cecilia Nalli, Laura Andreoli, Angela Tincani), Milan (Cecilia B. Chighizola, Maria Gerosa, Pierluigi Meroni), Padova (Alessandro Banzato*, Vittorio Pengo*); Jamaica: Kingston (Karel De Ceulaer); Japan: Sapporo (Tatsuya Atsumi); Lebanon: Beirut (Imad Uthman); Netherlands: Utrecht (Ronald Derksen, Philip de Groot); Spain: Barakaldo (Guillermo Ruiz Irastorza), Barcelona (Ignasi Rodriguez-Pinto, Guillermo Pons-Estel, Ricard Cervera), Madrid (Esther Rodriguez); United Kingdom: London (Ian Mackie, Hannah Cohen; and Savino Sciascia, Maria Laura Bertolaccini, Maria Cuadrado, Munther Khamashta); USA: Baltimore (Michelle Petri), Boston (Medha Barbhaiya), Chapel Hill (Robert Roubey), Chicago (Jason S. Knight), Durham (Tom Ortel), Galveston (Emilio Gonzalez, Rohan Willis), New York City (Steven Levine, Jacob Rand, H. Michael Belmont; and Doruk Erkan*, Jane Salmon*, Michael Lockshin*), Salt Lake City (Ware Branch).

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Barbhaiya, M., Andrade, D., Erkan, D. et al. AntiPhospholipid Syndrome Alliance for Clinical Trials and InternatiOnal Networking (APS ACTION): 5-Year Update. Curr Rheumatol Rep 18, 64 (2016). https://doi.org/10.1007/s11926-016-0611-y

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