Dear FHS Members,
The Fetal Heart Society Multi-Center Retrospective Study of Fetal Cardiomyopathy (CM) is now fully approved by the FHS Board. A large number of FHS centers have already committed to participate. Recruitment remains open for additional centers – see below for additional information on the study and if you would like to participate,
download and complete this letter [r20.rs6.net] and return to: angela.mcbrien@ahs.ca, lisa.hornberger@ahs.ca and shabnam.peyvandi@ucsf.edu. Please also email Angela and Lisa if there are any questions you have about participation.
Study goals:
1. To investigate genetic associations with fetal CM and genotype-phenotype correlation in the era of advanced genetic testing and frequency of extra-cardiac structural anomalies.
2. To determine clinical outcomes by for fetal CM by phenotypic subtype and the impact of genetic etiologies and extracardiac anomalies in a large, multi-center experience, examining the contribution of a genetic etiology and extracardiac pathology.
3. To examine echo-based hemodynamic features associated with worse/better clinical outcomes and their timing of development.
Inclusion criteria: The study will recruit fetuses with a primary CM or myocarditis diagnosed by fetal echo from 1st January 2017 to 31st December 2021.
Exclusion criteria: Fetuses with CM secondary to other factors, such as maternal diabetes, twin-twin transfusion, renal disease, etc. will be excluded.
Study arms:
Arm 1 – will involve data entry on REDCap regarding pregnancy factors (including outcome), fetal factors (genetic investigations, results, echo findings including CM subtype, additional structural cardiac, arrhythmic and extracardiac diagnoses), postnatal info (outcome information up to 1 year postnatal, genetic test results) and family information (regarding whether this is isolated CM or familial).
Arm 2 – will involve participating centers uploading de-identified DICOM information from fetal echoes (first, last and any echo in which significant change in the fetal cardiac findings was noted) and the first complete postnatal echo.
