At present submission of data to the ISHLT IPHF Registry is performed directly by your institution to ISHLT via a secure web-based online data entry system.

 

INSTITUTIONAL ELIGIBILITY

Any medical hospital in the world that cares for pediatric heart failure patients is eligible to enroll in and submit data to the IPHF Registry. Participation is not limited transplant centers. 
 

INSTITUTIONAL ENROLLMENT PROCESS

The enrollment process is as follows:

Step 1:

Complete and submit the IPHF Registry Institutional Enrollment Form

Step 2:

Complete and submit the IPHF Registry Data Sharing Agreement

Step 3:

Complete and submit a separate IPHF Registry Data Submission Access Form

Step 4:

Submit a letter on official letterhead from your institution's regulatory or ethics board verifying that all requirements for participation in the IPHF Registry, including compliance with HIPAA and GDPR requirements as applicable, have been met. It is the responsibility of the individual institution to determine and adhere to those requirements.

A hospital provider number and a user name and password for each authorized staff member will be sent to you once the above forms are received and approved.

 

ANNUAL PARTICIPATION RENEWAL REQUIREMENTS

To MAINTAIN PARTICIPATION, all enrolled institutions must:

  • Comply with all data submission requirements.
  • Submit to the ISHLT IPHF Registry by June 1 of every year a letter on official letterhead from your individual institution/Collective/OEO's regulatory or ethics board verifying that all requirements for participation in the IPHF Registry, including compliance with HIPAA and GDPR requirements as applicable, have been met. It is the responsibility of each individual institution to determine and adhere to those requirements.
  • Complete and submit an updated IPHF Registry Data Submission Access Form for each staff member who should have appropriate access to your data in the IPHF Registry for the coming year. NOTE: Individuals cannot share user names and passwords. Each individual must have his/her own user name and password.
  • Lapse in providing the above documents will result in suspension of data entry/transfer capability.