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APS ACTION Reaches Registry Milestone
March 2013 – As of March 15, 2013, APS ACTION has enrolled over 100 patients in its International Clinical Database and Repository. Currently, 16 centers are participating in the study.
APS ACTION Recruits First Patient from Greece for the Hydroxychloroquine Trial
February 2013 – Congratulations to Maria Tektonidou of the University of Athens for recruiting the first patient for the Hydroxychloroquine (HCQ) Trial in February 2013. APS ACTION is actively recruiting patients for the trial now that seven centers have received institutional review board approval. The purpose of the HCQ trial is to determine whether HCQ is beneficial in reducing blood clot formation in patients with positive aPL.
APS ACTION Creates Scientific Advisory Subcommittee
January 2013 – The Executive Committee created a new Scientific Advisory Subcommittee that will be chaired by Phillip de Groot. The new subcommittee will evaluate all future research proposals with the help of external/internal reviewers as needed. The Subcommittee’s final recommendations will be submitted to the Executive Committee.
APS ACTION Selects Honorary Members
January 2013 – APS ACTION appointed Graham Hughes, MD, Nigel Harris, MD and Sam Machin, MD as Honorary Members. Honorary Members comprise a small, highly selective group of individuals who have made major contributions to the field of APS and/or have demonstrated extraordinary service to APS ACTION.
APS ACTION Reaches Laboratory Agreements
January 2013 – Laboratory partnership agreements were signed with the Instrumentation Laboratory and INOVA Diagnostics for APS ACTION Core Laboratories.
APS ACTION Presents at the American College of Rheumatology Annual Meeting
November 2012 – Two APS ACTION-related presentations were given during the 2012 American College of Rheumatology Scientific Annual Meeting that was held in Washington, D.C., on November 9-14, 2012: 1) Antiphospholipid Syndrome Study Group presentation by Doruk Erkan, MD (APS ACTION Executive Committee Chair) about the accomplishments of the network; and 2) Clinical Posters Exhibit presentation by JoAnn Vega, CCRC (APS ACTION Lead Coordinator).
APS ACTION Convenes 3rd Annual Summit
November 2012 – The 3rd Annual APS ACTION Summit took place on November 8-9, 2012 in Washington, D.C., USA. Members discussed the progress of the main APS ACTION research projects and listened to presentations on the “Young Scholar aPL Prevalance project” by Cecilia Chighizola and the “Core Laboratories Validation” project by Silvia Pierangeli and Vittorio Pengo.
APS ACTION Re-Elects Executive Chair
November 2012 – The Chair of the Executive Chair, Doruk Erkan, was re-elected based on the Executive Committee’s nomination and voting during the 3rd Annual Summit. Dr. Erkan will serve as the Executive Chair for the period of January 1, 2013 to January 1, 2015.
APS ACTION Receives IND Approval for the Hydroxychloroquine Trial
November 2012 – The IND application for the Hydroxychloroquine Trial was approved by the Food and Drug Administration on November 6, 2012 under section 505(i) of the Federal Food, Drug and Cosmetic Act.
APS ACTION Receives New York Community Trust (NYCT) Grant
October 2012 – The New York Community Trust awarded APS ACTION $70,000 per year for three years for the Hydroxychloroquine Trial.
APS ACTION Establishes DSMB Board for Hydroxychloroquine Trial
August 2012 – The Data and Safety Monitoring Board (DSMB) for the Hydroxychloroquine Trial includes Robert Roubey, MD (chair), Steven Levine, MD, Steven Krilis, PhD, Jacob Rand, MD and Jordan Jaskwhich Elm, PhD (external). Members of the DSMB will periodically review and evaluate the accumulated data from the trial.
APS ACTION Receives Fridge from APS Foundation of America
July 2012 – The APS Foundation of America donated a fridge to APS ACTION. The fridge will be used at the Hospital for Special Surgery in New York to store specimens for APS ACTION’s research projects.
APS ACTION Selects 2012 Young Scholars
July 2012 – Congratulations to the 2012 APS ACTION Young Scholars: Savino Sciascia of St. Thomas Hospital, Cecilia Nalli of the University of Brescia and Stephanie Zuily of Nancy University. The APS ACTION Young Scholar Award is an annual award given to three young physician-scientists in effort to bring new perspective to APS research and encourage young scholars to become involved in the area.
APS ACTION Approves New Members
July 2012 – The APS ACTION Executive Committee selected new members to participate in the clinical research projects. The new members include: Zhuloi Zhang of Beijing University First Hospital, Tatsuya Atsumi of Hokkaido University, Guillermo Ruiz-Irastorza of Hospital Universitatio Cruces, Elias Toubi of Bnai-Zio Medical Center and Luis Fernando Penaranda of Hospital Pablo Tobon Uribe.
APS ACTION Holds 2nd Annual Working Meeting
June 2012 – The 2nd Annual APS ACTION Working Meeting took place on June 6, 2012 in Berlin, Germany. Sessions included the Executive Committee report by Doruk Erkan, Core Laboratory Manual Update by Silvia Pierangeli, IRB updates from each center, Institutional Clinical and Material Transfer Agreements, future funding opportunities and the Young Scholar aPL Prevalence project presentation by Laura Andreoli.
APS ACTION Attends National Institute of Health (NIH) Roundtable
May 2012 – APS ACTION members including Doruk Erkan, Steven Levine, Michael Locksin, Tom Ortel and Silvia Pierangeli met with program officers and leadership from several NIH institutes. During the meeting, APS ACTION presented an overview of APS and shared the mission and work of APS ACTION in driving international research efforts.
APS ACTION Young Scholars Explore Prevalence of Antiphospholipid Antibodies
Submitted for Publication – The APS ACTION Young Scholars, Laura Andreoli, Cecilia Chighizola, Alessandra Banzanto, Guillermo Pons-Estel and Guilherme de Jesus along with Doruk Erkan, developed a report on the estimated prevalence of antiphospholipid antibodies in patients with pregnancy morbidity, stroke, myocardial infraction and deep vein thrombosis. The resulting paper has been submitted for publication.
APS ACTION Selects New Members
March 2012 – The APS ACTION Executive Committee approved the following new members: Danieli Oliveria de Andrade of the University of Sao Paulo, Maria Tektonidou of the University of Athens, Karel de Ceulaer of the University of West Indies and Michelle Petri of Johns Hopkins University.
APS ACTION Presents at National Institutes of Health "Rare Disease Day"
February 2012 – APS ACTION representatives attended and presented a poster at a day-long symposium at National Institutes of Health (NIH) hosted by Office of Rare Diseases Research, National Center for Advancing Translational Sciences, and the NIH Clinical Center. The purpose of the meeting was to celebrate rare diseases research efforts across NIH, the Federal Government, and the advocacy community.
APS ACTION Receives Certificate of Incorporation
February 2012 - A Not-for-Profit Corporation Law certificate was approved for APS ACTION under the 501c3 section of the Not-for-Profit Corporation Law. The certificate will ease the receipt of contributions needed to promote and fund APS ACTION medical research for the prevention and cure of APS.
APS ACTION Launches First Collaborative International Research Projects
January 2012 - Following the APS ACTION Chicago Summit, APS ACTION launched its first two collaborative international projects: 1) a randomized controlled trial of hydroxychloroquine in the primary thrombosis prevention of persistently aPL-positive but thrombosis-free patients without other systemic autoimmune diseases; and 2) a web-based registry of aPL-positive patients with or without systemic autoimmune diseases, which will also include annual blood collection for aPL-testing and future basic science studies.
APS ACTION To Accept New Membership Applications
December 2011 – After repeated requests from other centers, APS ACTION has started accepting applications from new centers that can contribute to its mission. Membership will be decided based on well-defined eligibility criteria that include the APS research interest of centers and their commitment and ability to participate in APS ACTION research activities. Physicians/investigators interested in participating in APS ACTION network should contact JoAnn Vega, CCRC, APS ACTION lead coordinator, at apsaction@info.org.
APS ACTION Convenes 2nd Annual Summit
November 2011 - The 2nd APS ACTION Annual Summit took place in Chicago, IL on November 4-5, 2011. In addition to the APS ACTION Steering Committee Members from 17 medical centers throughout the world, the recipients of the 2011 APS ACTION Young Scholars Award attended, presented and received their awards (Alessandra Banzato, PhD, Cecilia Chighizola, MD, Guilherme de Jesus, MD).
APS ACTION Presents at the American College of Rheumatology Annual Meeting
November 2011 - Two APS ACTION-related presentations were given during the 2011 American College of Rheumatology Scientific Annual Meeting that was held in Chicago, IL on November 5-9, 2011: 1) Antiphospholipid Syndrome Study Group presentation by Doruk Erkan, MD (APS ACTION Executive Committee Chair) about the first year accomplishments of the network; and 2) Clinical Posters Exhibit presentation by JoAnn Vega, CCRC (APS ACTION Lead Coordinator).
APS ACTION Presents at the 8th European Forum on Antiphospholipid Antibodies
September 2011 – Dr Michael D. Lockshin (APS ACTION Executive Committee Member) was invited to Padua, Italy for the 8th European Form on aPL to present the progress of APS Action, including the background, structure, and future directions of APS ACTION. The purpose of the presentation was to discuss future international collaborations.
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APS ACTION Article in the APS Foundation of America, Inc Newsletter
December 2012 - APS ACTION held its 3rd Annual Summit November 8-9 2012 in Washington, D.C. Highlights included discussions on the APS ACTION main research projects – the Registry and Hydroxychloroquine Trial - and the Young Scholars research
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APS ACTION Article in the APS Foundation of America, Inc Newsletter
March 2012 - APS ACTION is the first-ever international research network that has been created specifically to design and conduct well-designed, large-scale, multi-center clinical trials in persistently antiphospholipid antibody (aPL)-positive patients.
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A Catalyst for Antiphospholipid Syndrome Research
March 2011 - The treatment of the serious, potentially fatal autoimmune clotting disorder antiphospholipid syndrome (APS) has, in general, been empiric and based on various approaches to inhibit the clotting system.
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Little-Studied Blood Syndrome Gains Researchers' Attention
March 15, 2011 - Motivated by the lack of treatment options for patients with antiphospholipid syndrome (APS), rheumatology researchers convened an international committee to address the problem directly.
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International Summit Held to Stimulate Collaborative Clinical Research on Antiphospholipid Syndrome
November 2, 2010 - Antiphospholipid Syndrome (APS) is a condition that may be responsible for up to one-third of strokes in people under age 50, up to one-fifth of all cases of blood clots in large veins, and one-quarter of recurrent miscarriages.
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