Slow Heart Registry of Fetal Immune-mediated High Degree Heart Block

Description

Few studies are specifically designed to address health concerns that are already relevant during pregnancy. The consequence is a lack of evidence on best clinical practice. This includes mothers and their babies when pregnancy is complicated by an abnormally slow heart rate due to maternal antibody-mediated heart disease in the unborn baby (fetus). Since the late seventies, it has been possible to detect and monitor fetal disease by ultrasound images and to treat selected conditions with pharmaceuticals administered via the mother. To this day, physicians need to make decisions about the management of such pregnancies without evidence from prospective clinical trials on drug efficacy and safety. The SLOW HEART REGISTRY is a multi-centered prospective observational study that will address the knowledge gap to guide future management of high-degree immune-mediated heart block to the best of care. The study seeks to establish an international database of the management and outcome of affected fetuses, to be used to publish information on the results of currently available prenatal care and to evaluate the need for additional research.

Conditions

Heart Block Complete, Heart Block Second Degree

Study Overview

Study Details

Study overview

Few studies are specifically designed to address health concerns that are already relevant during pregnancy. The consequence is a lack of evidence on best clinical practice. This includes mothers and their babies when pregnancy is complicated by an abnormally slow heart rate due to maternal antibody-mediated heart disease in the unborn baby (fetus). Since the late seventies, it has been possible to detect and monitor fetal disease by ultrasound images and to treat selected conditions with pharmaceuticals administered via the mother. To this day, physicians need to make decisions about the management of such pregnancies without evidence from prospective clinical trials on drug efficacy and safety. The SLOW HEART REGISTRY is a multi-centered prospective observational study that will address the knowledge gap to guide future management of high-degree immune-mediated heart block to the best of care. The study seeks to establish an international database of the management and outcome of affected fetuses, to be used to publish information on the results of currently available prenatal care and to evaluate the need for additional research.

Slow Heart Registry: A Prospective Observational Cohort Study of Fetal Immune-mediated High Degree Heart Block

Slow Heart Registry of Fetal Immune-mediated High Degree Heart Block

Condition
Heart Block Complete
Intervention / Treatment

-

Contacts and Locations

Phoenix

Phoenix Children's Hospital, Phoenix, Arizona, United States, 85016

San Francisco

University of California San Francisco, San Francisco, California, United States, 94143

Denver

Children's Hospital Colorado, Denver, Colorado, United States, 80205

Washington

Children's National Medical Center, Washington, District of Columbia, United States, 20010

Saint Petersburg

Johns Hopkins All Children's Hospital, Saint Petersburg, Florida, United States, 33701

Kansas City

Children's Mercy Kansas City, Kansas City, Kansas, United States, 64108

Boston

Boston Children's Hospital, Boston, Massachusetts, United States, 02115

Minneapolis

The Children's Heart Clinic/Children's Minnesota, Minneapolis, Minnesota, United States, 55404

New York

Columbia University (New York), New York, New York, United States, 10027

Houston

Texas Children's Hospital, Houston, Texas, United States, 77030

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • * Written informed maternal consent to participate in the Slow Heart Registry
  • * High-degree (2nd; 2:1; 2nd-3rd or 3rd degree) AVB diagnosed ≤ 32+0 weeks with or without hydrops
  • * Enrollment within maximally 8 days of high-degree AVB diagnosis
  • * Positive or pending anti-Ro/La antibody test results at the time of enrollment
  • * AVB associated with major CHD (e.g. left atrial isomerism, cc-TGA)
  • * AVB with known negative anti-Ro and/or La antibody test result at enrollment
  • * 1st degree AVB
  • * Sinus bradycardia with normal 1:1 AV conduction
  • * Blocked atrial bigeminy (irregular atrial rate with failure of AV conduction of the premature atrial beat)
  • * Primary delivery for postnatal treatment
  • * Maternal-fetal conditions (other than cardiac NL) associated with high odds of premature delivery or death (e.g. renal failure, significant infectious diseases, major extracardiac anomalies, PROM, etc.)
  • * Preexisting maternal mental disorder (e.g. bipolar, mania, severe depression, substance abuse)
  • * Poorly controlled insulin-dependent diabetes (HbA1c \>7%) at CAVB diagnosis
  • * Oligohydramnios (deepest/maximal vertical pocket \<2 cm)
  • * Severe IUGR (estimated fetal weight \<3rd percentile)

Ages Eligible for Study

16 Years to 50 Years

Sexes Eligible for Study

FEMALE

Accepts Healthy Volunteers

No

Collaborators and Investigators

The Hospital for Sick Children,

Edgar Jaeggi, MD, PRINCIPAL_INVESTIGATOR, The Hospital for Sick Children, Toronto

Study Record Dates

2029-12-31