♦ Antiphospholipid Antibody Nephropathy Survey
Completed as of June 8, 2020
♦ APS ACTION International Clinical Database and Repository
Much remains to be learned about the cause, symptoms, diagnosis, and treatment for APS. The APS ACTION International Clinical Database and Repository (“Registry”) is a multi-center collaborative effort to maintain a secure, web-based clinical database of persistently aPL-positive patients so that the natural course of these patients can be followed over the next 10 years. In addition to the clinical data, blood collection is performed once a year. Information gathered through the APS ACTION registry facilitates a better assessment of aPL-related clinical problems and helps determine the optimal management of aPL-positive patients. For general information about APS ACTION registry, please contact Joann Vega @ vegaj@hss.edu. Centers participating in the APS ACTION Registry are listed below:
ASIA:
Peking University First Hospital, Beijing, China
Center Principal Investigator: Zhuoli Zhang
Additional Investigator: Lanlan Ji
Contact: (0086) 13810485376 — thigh0829@163.com
Ruijin Hospital, Shanghai, China
Center Principal Investigator: Chengde Yang
Additional Investigator: Hui Shi
Contact: sh12053@rjh.com.cn
Hokkaido University Hospital, Sapporo, Japan
Center Principal Investigator: Tatsuya Atsumi
Additional Investigator: Olga Amengual
Contact: (81) 11-706-5913 — at3tat@med.hokudai.ac.jp
EUROPE:
Nancy University, Nancy, France
Center Principal Investigator: Denis Wahl
Additional Investigators: Stephane Zuily
Contact: (33) 383153869 — d.wahl@chu-nancy.fr
University of Athens, Athens, Greece
Center Principal Investigator: Maria Tektonidou
Contact: (0030)- 2132061786 — mtektonidou@gmail.com
University of Brescia, Brescia, Italy
Center Principal Investigator: Laura Andreoli
Additional Investigators: Angela Tincani, Cecilia Nalli
Contact: (39)- 030-3995488/7 – laura.andreoli@unibs.it, angela.tincani@unibs.it
University of Milan, Milan, Italy
Center Principal Investigator: Maria Gerosa
Additional Investigators: Pierluigi Meroni, Cecilia B. Chighizola
Contact: (39) 02 619112554 — cecilia.chighizola@unimi.it
University Hospital, Padova, Italy
Center Principal Investigator: Vittorio Pengo
Additional Investigators: Elisa Bison
Contact: (39) 04 98215658 — vittorio.pengo@unipd.it
Arcispedale Santa Maria Nuova, Reggio Emilia, Italy
Center Principal Investigator: Giulia Pazzola
Additional Investigators: Gabriella Di Tommaso
Contact: Giulia.Pazzola@ausl.re.it — Gabriella.DiTommaso@ausl.re.it
University of Turin, Turin, Italy
Center Principal Investigator: Savino Sciascia
Additional Investigators: Silivia Foddai, Massimo Radin
Contact: (39) 0112402051 — savino.sciascia@unito.it
Hospital Clinic, Barcelona, Catalonia, Spain
Center Principal Investigator: Ricard Cervera
Contact: (34) 93 2275774 — rcervera@clinic.ub.es
Vall d’Hebron University Hospital, Barcelona, Spain
Center Principal Investigator: Jose Pardos-Gea
Contact: jose.pardos@vallhebron.cat
Hospital Universitario Cruces, Bizkaia, Spain
Center Principal Investigator: Guillermo Ruiz-Irastorza
Additional Investigators: Amaia Ugarte
Contact: (34) 946006348–r.irastorza@euskaltel.net
Maimonides Institute for Biomedical Research of Cordoba, Cordoba, Spain
Center Principal Investigator: Mª Angeles Aguirre-Zamorano
Additional Investigators: Rosario López-Pedrera
Contact: rosario.lopez.exts@juntadeandalucia.es — maaguirrezamorano@yahoo.es
Hospital Universitario 12 de Octubre, Madrid, Spain
Center Principal Investigator: Esther Rodriguez
Contact: (34) 917792238 — meralmaraz@gmail.com
Istanbul University School of Medicine, Istanbul, Turkey
Center Principal Investigator: Bahar Artim-Esen
Additional Investigator: Murat Inanc
Contact: (90) 533 425 53 36 — bahar.artimesen@istanbul.edu.tr
NORTH AMERICA – CANADA:
CHU de Québec, pavillon CHUL, Quebec, Canada
Center Principal Investigator: Paul R. Fortin
Contact: Davy Eng–(1) 418-525-4444 ext. 48280–davy.eng@crchudequebec.ulaval.ca
University of Calgary, Calgary, Alberta, Canada
Central Principal Investigator: Ann E. Clark
Additional Investigators: Leslie Skeith, Megan Barber
Contact: aeclarke@ucalgary.ca — laskeith@ucalgary.ca — mrwbarbe@ucalgary.ca
NORTH AMERICA – USA:
Johns Hopkins University, Baltimore, MD, USA
Center Principal Investigator: Michelle Petri
Contact: (1) 410-955-9114 — mpetri@jhmi.edu
University of Michigan, Ann Arbor, MI, USA
Center Principal Investigator: Jason Knight
Additional Investigator: Ray Zuo
Contact: jsknight@med.umich.edu
Mayo Clinic, Rochester, MN, USA
Center Principal Investigator: Ali Duarte Garcia
Additional Investigator: Anne E. Tebo
Contact: Shirley Ann Osei-Onomah — Osei-Onomah.Shirleyannofos@mayo.edu
Northwell Health, New Hyde Park, NY, USA
Center Principal Investigator: Nina Kello
Contact: nkello@northwell.edu
Hospital for Special Surgery, New York, NY, USA
Center Principal Investigator: Doruk Erkan
Additional Investigators: Medha Barbhaiya, Michael D Lockshin, Jane Salmon
Contact: JoAnn Vega – (1) 212 774 2795 – vegaj@hss.edu
NYU Medical Center, New York, NY, USA
Center Principal Investigator: H. Michael Belmont
Contact: Eileen Lydon — (1) 212 598-6110 — eileen.lydon@nyumc.org
University of Texas Medical Branch, Galveston, TX, USA
Center Principal Investigator: Rohan Willis
Additional Investigator: Emilio Gonzalez
Contact: rowillis@utmb.edu , ebgonzal@utmb.edu
University of Utah, Salt Lake City, UT, USA
Center Principal Investigator: Ware D. Branch
Contact: (1) 801-581-8425 — dwbranch@gmail.com
SOUTH AMERICA:
University of Rio de Janeiro, Rio de Janeiro, Brazil
Center Principal Investigator: Guilherme de Jesus
Additional Investigators Roger Levy
Contact: (55) 21 9959-4089 — guilhermedejesus@gmail.com
University of São Paulo, São Paulo, Brazil
Center Principal Investigator: Danieli Oliveira de Andrade
Additional Investigators: Gustavo Balbi
Contact: (55) 11-30617176 — danieli.andrade@hc.fm.usp.br
Centro Regional de Enfermedades Autoinmunes y Reumáticas – Grupo Oroño (GO CREAR), Rosario, Santa Fe, Argentina
Center Principal Investigator: Guillermo J. Pons-Estel,
Additional Investigators: Rosana Quintana, Rosa M. Serrano
Contact: Antonela Vannucci — +54 9 (341) 6627762, +54 (341) 4261402 —antonela.vannucci@gmail.com
UNITED KINGDOM:
University College Hospitals London, London, UK
Center Principal Investigator: Hannah Cohen
Additional Investigators: Ian Mackie, Maria Efthymiou
Contact: hannah.cohen@uclh.nhs.uk
♦ APS ACTION Scientific Meetings
- 1st APS ACTION Annual Summit (APS Clinical Research Task Force International Summit), November 2-4, 2010, Miami, FL
- 1st APS ACTION Working Meeting, May 27, 2011, London, UK
- 2nd APS ACTION Annual Summit, November 4-5, 2011, Chicago, IL
- 2nd APS ACTION Working Meeting, June 6, 2012, Berlin, Germany
- 3rd APS ACTION Annual Summit, November 8-9, 2012, Washington, DC
- 3rd APS ACTION Working Meeting, June 12, 2013, Madrid, Spain
- 4th APS ACTION Annual Summit, September 16-17, 2013, Rio De Janeiro, Brazil
- 4th APS ACTION Working Meeting, June 11, 2014, Paris, France
- 5th APS ACTION Annual Summit, November 14, 2015, Boston, MA
- 5th APS ACTION Working Meeting, June 10, 2015, Rome, Italy
- 6th APS ACTION Annual Summit, November 6, 2015, San Francisco, CA
- 6th APS ACTION Annual Summit (Joint Session with the 15the International Congress on Antiphospholipid Antibodies), September 22, 2016, North Cyprus
- 7th APS ACTION Working Meeting, June 8, 2016, London, UK
- 8th APS ACTION Annual Summit, November 3, 2017, San Diego, CA
- 9th APS ACTION Annual Summit, October 20, 2018, Chicago, IL
- 10th APS ACTION Annual Summit, September 17, 2019, Manchester, UK
- 11th APS ACTION Annual Summit, November 10-11, 2020 (Virtual)
- 12th APS ACTION Annual Summit, November 4-5, 2021 (Virtual)
- 13th APS ACTION Annual Summit, November 17-18, 2022 (Virtual)
♦ Sponsors
Special thanks to APS ACTION contributors – we appreciate support from corporations, foundations
and individuals who believe in our research efforts on Antiphospholipid Syndrome.
- APS Foundation of America
- APS Foundation of Australia
- APS Support UK
- Diagnostics Reagents Limited
- INOVA Diagnostics
- Instrumentation Laboratory
- New York Community Trust
With appreciation to Dr Michelle Ugolini-Lopes (Sao Paulo, Brazil) for her generous help and expertise towards our website.
