Fetal Cardiac Disease Registry
Objective
The Fetal Cardiac Disease Registry aims to establish a nationwide database of congenital heart diseases and arrhythmias diagnosed during the fetal period at tertiary care centers.
Its goal is to clarify the actual conditions, clinical outcomes, and prognosis of these diseases.
Information derived from this registry will be shared broadly with patients, families, healthcare professionals, and the general public.
Ethical Approval and Disclosure
This registry is conducted under the approval of the Ethics Committee of the National Cerebral and Cardiovascular Center (centralized review system).
For an overview, please refer to the following document:
Participating Institutions
Case registration is conducted at tertiary care centers or networks of facilities that meet the following criteria (as of Aug 7, 2025, 78 institutions):
- Institutions affiliated with members of the Japanese Society of Fetal Cardiology
- Institutions performing Level 2 fetal echocardiographic examinations
- Accredited training facilities of the Japanese Society of Pediatric Cardiology and Cardiac Surgery
- Institutions that perform pediatric cardiac surgery
▶ 【List of Participating Institutions and Principal Investigators】
How to Apply for Data Use
Registry data may be used by members of the Japanese Society of Fetal Cardiology who serve as principal or co-investigators of the registry study entitled:
“Registry Study on the Actual Conditions, Outcomes, and Prognosis of Fetal Cardiac Diseases Diagnosed During the Fetal Period”
Permissible uses include:
- Preparing materials for insurance listing and public reporting
- Research planning
- Academic presentations and publications
Scope of Registered Data
The registry contains the following information:
- Prenatal and postnatal diagnoses of congenital heart disease (including arrhythmias)
- Fetal interventions
- Postnatal treatment within 24 hours of birth
- Outcomes and prognosis up to one month after birth
Data Use Categories
There are three main categories for data use:
- Public Use: For insurance or public health reporting
- Viewing Only: For preliminary assessment or planning (no proposal required)
- Academic Use: For conference presentations or journal publication
Please review the documents below before applying:
Then, download and complete the relevant application forms:
- 【Application Form – Public Use (Word)】
- 【Application Form – Viewing Only (Word)】
- 【Application Form – Academic Use (Word)】
Once approved by the Registry Committee, data will be provided via the Data Center through the designated administrative office.
Use of Annual Reports
Statistical summaries and annual reports available on the members-only page of the Japanese Society of Fetal Cardiology may be cited freely, provided that the source is properly acknowledged.
Research Using This Registry
(Coming soon)
Annual Summary Reports
(Coming soon)
Contact
Registry Committee Administrative Office
E-mail：jsfcsec_registry@ml.supportoffice.jp