International Society for Heart and Lung Transplantation
Follow-up Application
For a
New ISHLT Registry
Instructions and Follow-up Application Process Overview
NOTE 1: Discussion with the R&DC Chair is strongly encouraged before completion and submission
of the follow-up registry application.
NOTE 2: Please submit this Follow-up Application only if you have been requested to do so by the
R&DC.
1. This Follow-up Application must be completed in collaboration with the leadership of the
appropriate ISHLT Scientific Council(s).
2. Once final and approved by the appropriate Scientific Council Operating Board(s), the
Follow-up Application should be submitted by the Council-designated Project Lead to the
Registries and Databases Committee (R&DC) Chair via the ISHLT office
(amanda.rowe@ishlt.org).
3. The R&DC will perform a review of the Follow-up Application and will request additional
information from the applicant if needed.
4. Staff will work with the applicants, the Finance Committee, and the R&DC to develop a
preliminary cost estimate for the development and operation of the proposed Registry.
5. The R&DC and BoD will evaluate the Follow-up Application in conjunction with the cost
estimate and will make a final decision regarding approval of the proposed Registry.
1
Follow-up Application for a New ISHLT Registry
Proposed Name of Registry:
Date of Submission:
Submitted by:
Project Lead Name (must be an ISHLT member):
1. Please list the names and locations of the institutions that have expressed an interest in
participating in the Registry and attach letters of interest from institutions, if available:
2. How many institutions do you anticipate will submit data in each year of Registry
operations?
Year 1:
Year 2:
Year 3:
Year 4:
Year 5:
3. What is the estimated number of patients you anticipate will be entered into the database
each year?
Year 1:
Year 2:
Year 3:
Year 4:
Year 5:
4. Do you anticipate that training of data entry staff at the participating institution will be
necessary for this Registry?
[ ] Yes
[ ] No
5. If yes, how many staff will require training?
[ ] One staff member
[ ] All data entry staff
6. How frequently do you anticipate formal reports will be needed to be generated by the
DCC?
[ ] Annual Report at time of Annual Meeting
[ ] Semi-Annual Reports
[ ] Quarterly Reports
2
7. Do you anticipate that interval-based notifications to participating institutions to solicit
follow-up entries will be required?
[ ] Yes
[ ] No
8. If yes, how frequently?
9. Please use the table format below or attach a separate document listing the initial entry
data elements to be collected. Please indicate which data fields you consider essential (those
which cannot be omitted for logistical or cost issues without compromising the main goals of
the Registry).
Initial Entry Data Elements to be Collected
Data Field
Definition of Field
Check if data
field essential
10. Please use the table format below or attach a separate document listing the follow-up
data elements to be collected. Please indicate which data fields you consider essential (those
which cannot be omitted for logistical or cost issues without compromising the main goals of
the Registry).
Follow-up Data Elements to be Collected
Data Field
Definition of Field
Check if data
field essential
3