There are two paths for an institution to submit data to the ISHLT TTX Registry:

 
  • Directly by your institution to ISHLT via a secure web-based online data entry system or via electronic data upload (see SECTION A below)
  • Indirectly through a data sharing arrangement with the regional/national Data Collective/Organ Exchange Organization to which you currently submit your data (see SECTION B below)
 

A. INDIVIDUAL INSTITUTIONAL ENROLLMENT PROCESS

For individual institutions whose data are NOT provided to ISHLT via a Data Collective/Organ Exchange Organization, the enrollment process is as follows:
 

Step 1:

Complete and submit the TTX Registry Institutional Enrollment Form

Step 2:

Complete and submit the TTX Registry Data Sharing Agreement

Step 3:

For institutions that plan to submit data via the secure web-based online data entry system:
Complete and submit a separate TTX Registry Electronic Data Submission Access Form for each staff member who should have access to the TTX Registry.
NOTE: Individuals cannot share user names and passwords. Each individual must have his/her own user name and password.

Step 4:

For institutions that wish to arrange for electronic upload of data into the ISHLT TTX Registry:
Send an email to ISHLTHelp@unos.org requesting to upload your hospital's data electronically. Upon receipt of your email, a Registry staff member will contact you to discuss details regarding software specifications, file format, etc.

Step 5:

Submit a letter on official letterhead from your institution’s regulatory or ethics board verifying that all requirements for participation in the TTX 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.

 

B. DATA COLLECTIVE / ORGAN EXCHANGE ORGANIZATION ENROLLMENT PROCESS

For Data Collectives/Organ Exchange Organizations, the enrollment process is as follows:

Step 1:

Complete and submit the TTX Registry Collective/OEO Enrollment Form. Upon receipt of this form, a Registry staff member will contact you to review the next steps, discuss any additional requirements, and facilitate your enrollment process. Do not submit any additional forms until after you have spoken with the Registry staff member.

Step 2:

Complete and submit the TTX Registry Collective/OEO Data Sharing Agreement. This agreement will include software and file format specifications for data transfer to the Registry.

Step 3:

Complete and submit a separate OEO ISHLT TTX Registry Electronic Data Submission Access Form for each staff member at each hospital who should have READ ONLY access to your data in the TTX Registry.
NOTE: Individuals cannot share user names and passwords. Each individual must have his/her own user name and password.

Step 4:

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

Upon receipt and approval of the required forms, a provider number and a user name and password for each authorized staff member will be sent to you and a Registry staff member will contact you to discuss final details for data transfer.

 

C. ANNUAL PARTICIPATION RENEWAL REQUIREMENTS

To MAINTAIN PARTICIPATION, all enrolled individual institutions and all enrolled Data Collectives/OEOs must:

  • Comply with all data submission requirements.
  • Submit to the ISHLT TTX 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 TTX Registry, including compliance with HIPAA and GDPR requirements as applicable, have been met. It is the responsibility of the individual institution/Collective/OEO to determine and adhere to those requirements.
  • Complete and submit an updated TTX Registry Electronic Data Submission Access Form (Institution or OEO) for each staff member who should have appropriate access to your data in the TTX 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.