Antiphospholipid syndrome

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25Active trials65Specialists8Treatment centers

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Antiphospholipid syndrome (APS), also known as Hughes syndrome or antiphospholipid antibody syndrome, is an autoimmune condition where the body's immune system mistakenly produces antibodies that attack certain proteins in the blood. These antibodies, called antiphospholipid antibodies, make the blood more likely to clot than normal. This can lead to dangerous blood clots forming in veins or arteries throughout the body, including the legs, lungs, brain, and kidneys. APS is one of the most common causes of recurrent miscarriages and pregnancy complications, as blood clots can form in the placenta and affect the baby's growth. People with APS may experience deep vein thrombosis (blood clots in the legs), strokes, heart attacks, or pulmonary embolism (blood clots in the lungs). Some people also develop a low platelet count, skin rashes, or heart valve problems. APS can occur on its own (primary APS) or alongside another autoimmune disease, most commonly systemic lupus erythematosus (secondary APS). In rare cases, a severe form called catastrophic antiphospholipid syndrome (CAPS) can develop, where multiple organ systems are affected at once. Treatment focuses on preventing blood clots using blood-thinning medications such as warfarin, heparin, and low-dose aspirin. With proper treatment, many people with APS can lead full and active lives, though lifelong monitoring and medication are usually necessary.

Also known as:

Key symptoms:

Blood clots in the legs (deep vein thrombosis)Blood clots in the lungs (pulmonary embolism)Stroke or mini-stroke (transient ischemic attack)Recurrent miscarriages or pregnancy lossLow platelet count causing easy bruisingSkin rash with a net-like purple pattern (livedo reticularis)Heart valve problemsKidney problemsHeadaches or migrainesMemory problems or difficulty concentratingLeg swelling and painPreeclampsia or premature birth during pregnancySkin ulcersVision changesFatigue

Clinical phenotype terms (39)— hover any for plain English
Anti-phosphatidyl glycerol antibody positivityHP:0034098Anti-phosphatidyl inositol antibody positivityHP:0034099Anti-phosphatidyl serine antibody positivityHP:0034100Anti-annexin-V antibody positivityHP:0034101Diffuse alveolar hemorrhageHP:0025420Ischemic strokeHP:0002140Transient ischemic attackHP:0002326Antiphospholipid antibody positivityHP:0003613Arterial thrombosisHP:0004420Female infertilityHP:0008222Anticardiolipin IgG antibody positivityHP:0020136Anticardiolipin IgM antibody positivityHP:0020137Lupus anticoagulantHP:0025343
Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Dec 2025Observational Study to Evaluate the Effectiveness of DOACS for Secondary Thrombosis Prevention in Low-risk Thrombotic APS Patients

Infanta Leonor University Hospital

TrialRECRUITING
Nov 2025Hematological Markers MPV, PLR, and NLR in Primary Versus Secondary Antiphospholipid Syndrome

New Valley University

TrialNOT YET RECRUITING
Sep 2025Prevalence and Consequences of Antiphospholipid Syndrome in Patients Aged 65 and Over With Ischemic Strokes (IS)

CHU de Reims — NA

TrialRECRUITING
Sep 2025DOAC Versus VKA in Patients With Non-high-risk APS : Prospective Cohort Study

Central Hospital, Nancy, France

TrialNOT YET RECRUITING
Jul 2025OBServaToIre interNational Des Patients AnTiphospholipidEs traités Par Anticoagulants Oraux Directs

Central Hospital, Nancy, France

TrialNOT YET RECRUITING
Feb 2025Clinical Outcomes of Primary Versus Secondary Antiphospholipid Syndrome

Assiut University

TrialNOT YET RECRUITING
Feb 2025Evaluation of Cell Membrane Expression of Annexin A2 on Monocytes by Flow Cytometry in Primary Antiphospholipid Syndrome

Centre Hospitalier Universitaire, Amiens — NA

TrialRECRUITING
Dec 2024Phase 1b Long-term Extension Trial of RAY121 in Immunological Diseases (RAINBOW-LTE Trial)

Chugai Pharmaceutical — PHASE1

TrialENROLLING BY INVITATION
Oct 2024The Safety and Efficiency of Sirolimus in Primary Antiphospholipid Syndrome: a Randomized Control Study

Peking University People's Hospital — PHASE2

TrialNOT YET RECRUITING
Sep 2024Negative Antiphospholipid Syndrome: a Multicentric Study

Italian Society for Rheumatology

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

No FDA-approved treatments are currently listed for Antiphospholipid syndrome.

20 clinical trialsare actively recruiting — trials can provide access to cutting-edge therapies.

View clinical trials →

Clinical Trials

20 recruitingView all trials with filters →
Phase 41 trial
Comparison of Clopidogrel-based Antiplatelet Therapy Versus Warfarin As Secondary Prevention Strategy for AntiPhospholipid Syndrome-related STROKE
Phase 4
Actively Recruiting
PI: Seung-Hoon Lee, MD, PhD (Seoul National University Hospital) · Sites: Anyang; Busan +30 more · Age: 1999 yrs
Phase 24 trials
IMPACT Study: IMProve Pregnancy in APS With Certolizumab Therapy
Phase 2
Actively Recruiting
PI: D. Ware Branch, MD (University of Utah) · Sites: New York, New York; Salt Lake City, Utah +1 more · Age: 1840 yrs
Safety and Efficacy of Zanubrutinib in the Treatment of Antiphospholipid Syndrome With Secondary Thrombocytopenia
Phase 2
Actively Recruiting
PI: Lei Zhang, MD (Chinese Academy of Medical Science and Blood Disea) · Sites: Tianjin, Tianjin Municipality; Tianjin, Tianjin Municipality · Age: 1899 yrs
Anti-CD38 Antibody Treating APS With Thrombocytopenia
Phase 2
Actively Recruiting
PI: Lei Zhang, MD (Chinese Academy of Medical Science and Blood Disea) · Sites: Tianjin, Tianjin Municipality · Age: 1899 yrs
Effect of Belimumab on Antibody Titers in Primary APS Patients
Phase 2
Actively Recruiting
· Sites: Shanghai, Shanghai Municipality · Age: 1899 yrs
Other15 trials
Follow-up Cohort of Patients With Antiphospholipid Syndrome
Actively Recruiting
· Sites: Rouen · Age: 1875 yrs
Pilot Study of Gut Commensals in Antiphospholipid Syndrome
Active
PI: Martin A Kriegel, MD PhD (Yale University) · Sites: New Haven, Connecticut · Age: 1870 yrs
New Biological Tests in Patients With Antiphospholipid Antibodies
Actively Recruiting
· Sites: Bron; Clermont-Ferrand +2 more · Age: 1899 yrs
Patients Pregnant Women With or Without Primary Antiphospholipid Antibody Syndrome
Actively Recruiting
· Sites: Milan · Age: 1845 yrs
Negative Antiphospholipid Syndrome: a Multicentric Study
Actively Recruiting
· Sites: Roma, Rome · Age: 1865 yrs
Chinese AntiphosPholipid Syndrome cohorT cOllaborative NEtworks
Actively Recruiting
PI: Jiuliang Zhao, M.D. (Peking Union Medical College Hospital) · Sites: Beijing, Beijing Municipality; Beijing, Beijing Municipality +16 more
International Registry of Thrombotic APS Patients Treated With Direct Oral Anticoagulants
Actively Recruiting
· Sites: Nancy
Laboratory and Clinical Data in Antiphospholipid Patients
Actively Recruiting
· Sites: Lille; Nancy · Age: 1899 yrs
Genetic Risk Factors Associated With Antiphospholipid Antibody Syndrome
Actively Recruiting
PI: Thomas L. Ortel, MD, PhD (Duke University) · Sites: Durham, North Carolina
Predictors of Pregnancy Outcome in Systemic Lupus Erythematosus (SLE) and Antiphospholipid Syndrome (APS)
Actively Recruiting
PI: Jane E. Salmon, M.D. (Hospital for Special Surgery, New York) · Sites: Chicago, Illinois; Chicago, Illinois +8 more · Age: 1845 yrs
Register for Pediatric Patients With Antiphospholipid Syndrome (APS): European Project Extended Internationally Study
Actively Recruiting
PI: Lavjay Butani, M.D. (University of California, Davis) · Sites: Sacramento, California · Age: 018 yrs
Antiphospholipid Syndrome and Postpartum Pulmonary Artery Pressure
Actively Recruiting
PI: Emrush Rexhaj, MD (Insel Gruppe AG, Inselspital, Bern) · Sites: Bern · Age: 1699 yrs
Prevalence and Etiologies of Intracranial Stenosis in Patients With Antiphospholipid Syndrome
Enrolling by Invitation
PI: Bonaventure Yiu Ming IP, MB ChB (Chinese University of Hong Kong) · Sites: Hong Kong · Age: 1899 yrs
Observational Study to Evaluate the Effectiveness of DOACS for Secondary Thrombosis Prevention in Low-risk Thrombotic APS Patients
Actively Recruiting
PI: Anabel Franco-Moreno, MD, PhD (Sociedad Española De Medicina Interna) · Sites: Madrid, Madrid; Madrid, Madrid · Age: 1899 yrs
Registry on Augmented Antithrombotic Treatment Regimens for Patients With Arterial Thrombotic APS
Actively Recruiting
PI: Cary Clark (International Society on Thrombosis and Haemostasi) · Sites: Buenos Aires, Buenos Aires F.D.; Córdoba +1 more · Age: 1899 yrs

Specialists

Showing 25 of 65View all specialists →
JM
Jean-Christophe Gris, MD
Specialist
PI on 1 active trial
MM
Mark A Crowther, MD, MSc
Specialist
PI on 1 active trial2 Antiphospholipid syndrome publications
EL
Edelgard Lindhoff-Last
Specialist
PI on 1 active trial5 Antiphospholipid syndrome publications
SM
Scott C Woller, MD
FT. HARRISON, MT
Specialist
PI on 1 active trial
SP
Silvia Pierangeli, PhD
Specialist
PI on 1 active trial
KM
Kimberly J Legault, MD
Specialist
PI on 1 active trial
HM
Huji Xu, MD,Ph.D
Specialist
PI on 1 active trial
JM
Jiuliang Zhao, M.D.
Specialist
PI on 2 active trials
JP
James Taylor, PharmD
Specialist
PI on 1 active trial
LP
Lauren B McKnight, PharmD
CHAPEL HILL, NC
Specialist
PI on 1 active trial
MA
Mary-Carmen Amigo
Specialist
2 Antiphospholipid syndrome publications
RN
Ray Naden
Specialist
2 Antiphospholipid syndrome publications
DE
Doruk Erkan
NEW YORK, NY
Specialist
3 Antiphospholipid syndrome publications
FM
Florian Manneville
Specialist
2 Antiphospholipid syndrome publications
AH
Alison Hendry
LOUISVILLE, KY
Specialist
2 Antiphospholipid syndrome publications
RC
Ricard Cervera
LAS VEGAS, NV
Specialist
3 Antiphospholipid syndrome publications
DB
D Ware Branch
Specialist
5 Antiphospholipid syndrome publications
JG
Jean-Christophe Gris
Specialist
3 Antiphospholipid syndrome publications
JK
Jason S Knight
Specialist
7 Antiphospholipid syndrome publications
HC
Hannah Cohen
Specialist
4 Antiphospholipid syndrome publications
MT
Maria G Tektonidou
Specialist
4 Antiphospholipid syndrome publications
TO
Thomas L Ortel
DURHAM, NC
Specialist
3 Antiphospholipid syndrome publications
SS
Savino Sciascia
Specialist
3 Antiphospholipid syndrome publications
MB
Medha Barbhaiya
NEW YORK, NY
Specialist
2 Antiphospholipid syndrome publications
ZL
Zhanguo Li
Specialist
PI on 7 active trials819 Antiphospholipid syndrome publications

Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA Rare Disease Day Program

UCLA Health

📍 Los Angeles, CA

Travel Grants

No travel grants are currently matched to Antiphospholipid syndrome.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Antiphospholipid syndrome

Disease timeline:

New recruiting trial: Safety and Efficacy of Zanubrutinib in the Treatment of Antiphospholipid Syndrome With Secondary Thrombocytopenia

A new clinical trial is recruiting patients for Antiphospholipid syndrome

New recruiting trial: Anti-CD38 Antibody Treating APS With Thrombocytopenia

A new clinical trial is recruiting patients for Antiphospholipid syndrome

New recruiting trial: Laboratory and Clinical Data in Antiphospholipid Patients

A new clinical trial is recruiting patients for Antiphospholipid syndrome

New recruiting trial: Negative Antiphospholipid Syndrome: a Multicentric Study

A new clinical trial is recruiting patients for Antiphospholipid syndrome

New recruiting trial: Evaluation of Cell Membrane Expression of Annexin A2 on Monocytes by Flow Cytometry in Primary Antiphospholipid Syndrome

A new clinical trial is recruiting patients for Antiphospholipid syndrome

New recruiting trial: Genetic Risk Factors Associated With Antiphospholipid Antibody Syndrome

A new clinical trial is recruiting patients for Antiphospholipid syndrome

New recruiting trial: Chinese AntiphosPholipid Syndrome cohorT cOllaborative NEtworks

A new clinical trial is recruiting patients for Antiphospholipid syndrome

New recruiting trial: Register for Pediatric Patients With Antiphospholipid Syndrome (APS): European Project Extended Internationally Study

A new clinical trial is recruiting patients for Antiphospholipid syndrome

New recruiting trial: Prevalence and Consequences of Antiphospholipid Syndrome in Patients Aged 65 and Over With Ischemic Strokes (IS)

A new clinical trial is recruiting patients for Antiphospholipid syndrome

New recruiting trial: Antiphospholipid Syndrome and Postpartum Pulmonary Artery Pressure

A new clinical trial is recruiting patients for Antiphospholipid syndrome

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.What type of antiphospholipid antibodies do I have, and does that affect my risk level?,How long will I need to take blood-thinning medication — is it lifelong?,What are the warning signs of a blood clot or bleeding emergency that I should watch for?,Is it safe for me to become pregnant, and what special care would I need during pregnancy?,Are there any medications, foods, or activities I should avoid while on blood thinners?,Should I be tested for lupus or other autoimmune conditions?,How often do I need blood tests and follow-up appointments?

Common questions about Antiphospholipid syndrome

What is Antiphospholipid syndrome?

Antiphospholipid syndrome (APS), also known as Hughes syndrome or antiphospholipid antibody syndrome, is an autoimmune condition where the body's immune system mistakenly produces antibodies that attack certain proteins in the blood. These antibodies, called antiphospholipid antibodies, make the blood more likely to clot than normal. This can lead to dangerous blood clots forming in veins or arteries throughout the body, including the legs, lungs, brain, and kidneys. APS is one of the most common causes of recurrent miscarriages and pregnancy complications, as blood clots can form in the plac

How is Antiphospholipid syndrome inherited?

Antiphospholipid syndrome follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Antiphospholipid syndrome typically begin?

Typical onset of Antiphospholipid syndrome is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Antiphospholipid syndrome?

Yes — 20 recruiting clinical trials are currently listed for Antiphospholipid syndrome on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Antiphospholipid syndrome?

25 specialists and care centers treating Antiphospholipid syndrome are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.