Surveillance and Treatment to Prevent Fetal Atrioventricular Block Likely to Occur Quickly (STOP BLOQ)

Last updated: April 8, 2025
Sponsor: NYU Langone Health
Overall Status: Active - Recruiting

Phase

3

Condition

N/A

Treatment

Dexamethasone

IVIG

Clinical Study ID

NCT04474223
20-00363
  • Ages > 18
  • Female

Study Summary

Fetal complete (i.e., third degree, 3°) atrioventricular block (AVB), identified in the 2nd trimester of pregnancy in an otherwise normally developing heart, is almost universally associated with maternal anti-Ro autoantibodies and results in death in a fifth of cases. To date treatment of 3° AVB has been ineffective in restoring normal rhythm (NR) which may be because current surveillance is limited to once- weekly fetal echocardiograms. It is hypothesized that there may be a vital transition period of several hours in which incomplete block (2° AVB) may be successfully treated avoiding fully advanced irreversible 3° AVB. To optimize the likelihood of timely detection of the transition period this study comprises three steps: 1) to risk stratify for high titer anti-Ro antibodies, which are necessary but not sufficient to develop fetal AVB; 2) to empower mothers to identify 2° AVB by using fetal heart rate and rhythm monitoring (FHRM) at home, and 3) to rapidly treat mothers who detect an abnormality by monitoring with an urgent echocardiogram that confirms 2° AVB with the hope of reversing 2° AVB before it becomes permanent (3° AVB). In addition, it will be determined if FHRM reduces the need for weekly echoes. Although mothers with low titer anti-Ro will not be continued in Step 2 and therefore not followed by FHRM, birth ECGs will be collected to confirm that low titer antibodies do not confer risk. It is anticipated that this study will provide an evidenced based surveillance strategy for those mothers at high risk of having a child with 3° AVB.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  1. Provision of signed and dated informed consent form

  2. Stated willingness to comply with all study procedures and availability for theduration of the study

  3. Be <18 weeks pregnant at the time of enrollment

  4. Titer of anti-Ro 52 or 60 antibodies ≥1,000 EU

  5. Any positive titer of anti-Ro if a history of a previously affected child

  6. Ability to take oral medication and be willing to adhere to the dexamethasone andIVIG protocols.

  7. Ability to perform Doppler fetal heart rate and rhythm monitoring in the ambulatorysetting,

  8. Ability to send an audiotext message by cell phone therefore the participant will beinformed that they need a phone with texting capabilities. Located within 6 hoursdrive of the participating pediatric cardiology site

  9. Be ≥18 years of age

Exclusion

Exclusion Criteria:

  1. Multi-fetal pregnancy

  2. Known allergic reactions to components of IVIG, or dexamethasone or maternal IgAdeficiency

  3. Fetal conduction system disease already present in the current pregnancy

  4. Any women who in the opinion of the investigator cannot understand the consent formor be able to perform thrice daily home monitoring or recognize an abnormal fetalheart rate or rhythm

  5. Women prisoners

  6. Treatment with >20 mg/prednisone q day or with any dose of fluorinated steroids atenrollment

Study Design

Total Participants: 1300
Treatment Group(s): 2
Primary Treatment: Dexamethasone
Phase: 3
Study Start date:
August 01, 2020
Estimated Completion Date:
June 30, 2029

Study Description

Fetal complete (3°) atrioventricular block (AVB), identified in the 2nd trimester in an otherwise normally developing heart, is almost universally associated with maternal anti-Ro autoantibodies, which transcytose the placenta via the trophoblastic IgG receptor, FcγRn. The burden of 3° AVB is considerable: perinatal mortality of 18% exceeds that for all non-cardiac congenital anomalies combined, and almost all survivors require lifelong cardiac pacing with its associated complications. It has been speculated that full expression of conduction disease occurs by sequential fetal progression from normal rhythm (NR) to 1° AVB [prolonged AV interval assessed by echocardiogram (echo)], to 2° AVB (irregular cardiac rhythm or bradycardia), culminating in 3° AVB. Fetal heart rate and rhythm monitoring (FHRM) suggests a time interval of ~12 hours for the transition from NR to 3° AVB, albeit the culprit biologic processes (inflammation leading to fibrosis) likely initiate prior to clinical detection. Anecdotal evidence suggests this transition period, marked by an irregular rhythm and/or bradycardia, may be the only window of opportunity for anti-inflammatory treatment to restore NR.

A barrier to preventing progression to 3° AVB is the absence of a technique to accurately surveil for the precipitate transition from NR to 3° AVB. Surveillance limited to weekly echos (current standard of care) may be too infrequent to detect this transition period when treatment is most likely to be effective. We have now obviated this obstacle and shown that ambulatory FHRM by the mother at home with confirmation of abnormal findings by echo is not only feasible but may afford rapid treatment restoring NR. Combining results from studies comprising 275 anti-Ro+ pregnancies, 87% completed monitoring with a false positive rate of 5%. In 4 cases of 2° AVB identified by FHRM and treated <12h, AVB reversed. Remarkably, no cases of 2° or 3° AVB were missed, suggesting mothers can recognize abnormal FHRM, reducing or precluding the need for weekly echos.

The proposed project combines the expertise of fetal cardiologist Bettina F. Cuneo, MD, initiator and PI of the FHRM program, and rheumatologist Jill P. Buyon, MD, founder/director of the largest extant registry of anti-Ro-mediated AVB, whose research on the pathogenesis supports a fetal inflammatory component associated with high-titer antibodies. Participants will be referred from 35 sites in 3 sequential Steps: 1) Screening for high titer anti-Ro60 or Ro52 centrally in Dr. Buyon's lab; 2) Surveillance by FHRM 3x daily and weekly echo; 3) Treatment of 2° AVB identified by FHRM confirmed by echo. Feasibility of FHRM supported by weekly echo of high-autoantibody-titer mothers will be leveraged to address the efficacy of expeditious (<12 h after detection) treatment of 2° AVB as well as the incidence/outcome of AV interval prolongation and extra-nodal disease.

Connect with a study center

  • Stollery Children's Hospital

    Edmonton, Alberta AB T6G 2B7
    Canada

    Site Not Available

  • Phoenix Children's Hospital

    Phoenix, Arizona 85016
    United States

    Site Not Available

  • Phoenix Children's Hospital/Dignity Health

    Phoenix, Arizona 85016
    United States

    Active - Recruiting

  • Scripps Memorial Hospital

    La Jolla, California 92037
    United States

    Site Not Available

  • University of California - Los Angeles (UCLA)

    Los Angeles, California 90095
    United States

    Active - Recruiting

  • Stanford University

    Palo Alto, California 94305
    United States

    Active - Recruiting

  • University of California-San Francisco

    San Francisco, California 94143
    United States

    Active - Recruiting

  • University of Colorado, Denver (UCD)

    Aurora, Colorado 80204
    United States

    Active - Recruiting

  • Yale University School of Medicine

    New Haven, Connecticut 06510
    United States

    Active - Recruiting

  • Children's National Medical Center

    Washington, District of Columbia 20010
    United States

    Site Not Available

  • Children's National Medical Center/George Washington University

    Washington, District of Columbia 20010
    United States

    Active - Recruiting

  • Rush University Children's Hospital

    Chicago, Illinois 60612
    United States

    Site Not Available

  • Riley Children's Hospital / Indiana University School of Medicine

    Indianapolis, Indiana 46202
    United States

    Site Not Available

  • University of Iowa

    Iowa City, Iowa 52242
    United States

    Site Not Available

  • University of Kentucky / Kentucky Children's Hospital

    Lexington, Kentucky 40536
    United States

    Active - Recruiting

  • University of Louisville / Norton Children's Hospital

    Louisville, Kentucky 40202
    United States

    Site Not Available

  • Johns Hopkins Children's Center

    Baltimore, Maryland 21287
    United States

    Site Not Available

  • University of Michigan / C. S. Mott Children's Hospital

    Ann Arbor, Michigan 48109
    United States

    Active - Recruiting

  • Children's Hospital of Minnesota

    Minneapolis, Minnesota 55404
    United States

    Active - Recruiting

  • University of Minnesota

    Minneapolis, Minnesota 55455
    United States

    Site Not Available

  • Children's Heart Center Nevada

    Las Vegas, Nevada 89144
    United States

    Site Not Available

  • Perinatal Associates of New Mexico

    Rio Rancho, New Mexico 87124
    United States

    Active - Recruiting

  • Columbia University Medical Center

    New York, New York 10032
    United States

    Active - Recruiting

  • Mount Sinai

    New York, New York 10029
    United States

    Active - Recruiting

  • NYU Langone Health

    New York, New York 10016
    United States

    Active - Recruiting

  • New York Medical College

    Valhalla, New York 10595
    United States

    Site Not Available

  • Duke University Medical Center

    Durham, North Carolina 27710
    United States

    Site Not Available

  • Stanford Health

    Fargo, North Dakota 58103
    United States

    Site Not Available

  • Cleveland Clinic Lerner College of Medicine

    Cleveland, Ohio 44195
    United States

    Active - Recruiting

  • UH Rainbow Babies / Children's Hospital

    Cleveland, Ohio 44106
    United States

    Active - Recruiting

  • Oregon Health & Science University (OHSU)

    Portland, Oregon 97239
    United States

    Site Not Available

  • Vanderbilt University Medical Center

    Nashville, Tennessee 37232
    United States

    Active - Recruiting

  • Baylor College of Medicine

    Houston, Texas 77030
    United States

    Active - Recruiting

  • University of Texas - Houston

    Houston, Texas 77030
    United States

    Site Not Available

  • University of Utah Health

    Salt Lake City, Utah 84102
    United States

    Active - Recruiting

  • University of Vermont Children's Hospital

    Burlington, Vermont 05401
    United States

    Active - Recruiting

  • Eastern Virginia Medical School (EVMS)

    Norfolk, Virginia 23507
    United States

    Active - Recruiting

  • Seattle Children's Hospital

    Seattle, Washington 98105
    United States

    Site Not Available

  • West Virginia University

    Morgantown, West Virginia 26506
    United States

    Site Not Available

  • University of Wisconsin - Madison

    Madison, Wisconsin 53715
    United States

    Site Not Available

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