Version 1.1.14 (Released September 28, 2020)

Version 1.1.14 (Released September 28, 2020)

System Changes

  • A new grid has been added at the top of the site dashboard to display system generated error notes and sticky notes.

Patient Summary Report:

  • Added COVID-19 Infections to the Event Summary section of the Patient Summary Reports

Form 8 (Post Transplant Annual Follow-up)

  • Question 15: Diabetes Requiring Insulin
    • Revised question to “Diabetes Requiring Insulin since the last follow-up?”
    • Clarification text added underneath question: “Select ‘Yes’ every year at time of annual follow-up if the patient is on insulin for diabetes since last follow-up, even if the insulin start date has not changed since the last follow-up”
  • Question 15: Diabetes Event Date
    • Added clarification text: “Date the patient started insulin. If the patient stopped and restarted, it should be the most recent start date.”
  • Question 15: Was the Peds QL survey administrated at the time of this annual follow-up or in the last year?
    • NEW Answer Option “Administrative/staff omission due to unavailability, time constraints, other”
  • Question 15: Was the Family Impact Scale survey administrated at the time of this annual follow-up or in the last year?
    • NEW Answer Option “Administrative/staff omission due to unavailability, time constraints, other”

Covid-19 Infection Form

  • Question 3a: New Sub Question Mode of Testing
    • Added new sub question to appear if COVID-19 Test Positive is selected in question 3
      • NEW Question 3a: Mode of Testing
      • Answer Options: PCR, Antibody Testing, Both PCR and Antibody Testing
    • Question 5: COVID Labs
      • Revised to reflect a “highest value” and a “lowest value” for each lab (was previously only on some labs)
      • Revised clarification text to read “at time of infection” instead of “at time of hospitalization”
      • Added Pro BNP
    • Question 9: Location of Exposure
      • NEW Answer Option: “Long Term Care Facility”

Version 1.1.13 (June 8, 2020)

Version 1.1.13 (June 8, 2020)

Form 1RL (Relisting)

  • Question 7a.iv (US Listing Status)
    • Added options of status 3 and 4

Form 8 (Post Transplant Annual Follow-up)

  • Question 3: Current residence zipcode/postal code
    • Questions reordered so that this question is now question 3
  • Question 8: Medications
    • Medications can no longer be deleted by selecting them in the dropdown list. Medications can only be deleted by selecting them in the list displayed beneath the drop down box or by unselecting the individual checkboxes
    • Co-Trimoxazole moved to ‘other antibiotics’
    • Clotrimazole added to ‘other, antifungal’
  • Question 15m: Was the Peds QL survey administrated at the time of this annual follow-up or in the last year?  – NEW QUESTION
  • Question 15n: Was the Family Impact Scale survey administrated at the time of this annual follow-up or in the last year? – NEW QUESTION

Form 12 (Pre Transplant Annual Follow-up)

  • Question 4a: (US Listing Status)
    • Added options of status 3 and 4

Form 6C (Covid Infection Form)

  • Question 7
    • Added answer option of ‘None’ at the top of the list.
  • Question 10
    • Added answer option of ‘None’ at the top of the list.
  • Question 11a
    • Added the following at the end of the question text “… reduced because of COVID-19”
  • Question 13
    • Added answer option of ‘None’ at the top of the list.
  • Question 14
    • Added explanatory text under the question that says “If patient is not in the ICU, enter 0”
    • Added missing reason option of “still in hospital”
  • Question 15
    • Added explanatory text under the question that says “If patient is not in a ventilator, enter 0”
    • Added missing reason option of “still in hospital”
  • Question 16
    • Added explanatory text under the question that says “If patient is not hospitalized, enter 0”
    • Added missing reason option of “still in hospital”

Version 1.1.12.1 (April 30, 2020)

Version 1.1.12.1 (April 30, 2020)

  • New Forms
    • New Infection Form (Form 6C) to collect COVID-19 infections in PHTS Patients
    • New Patient Enrollment Form to enroll COVID-19 positive patients that are not enrolled in PHTS, but that test positive
  • Form 6 (Infection)
    • Revised system to display question 9 (Significant Long Term Sequelae) if ‘Unresolved at 30 days’ is selected in question 8 (Outcome at 30 days).

Version 1.1.12 (January 30, 2020)

Version 1.1.12 (January 30, 2020)

  • System Changes
    • Added form validations to all percentages to prevent limit entry to values between 0 and 100
  • Patient Enrollment Form
    • Added form validation to notify users if single ventricle is answered in a way that is not consistent with the congenital diagnosis reported.
  • Form 8 (Post Transplant Annual Follow-up)
    • Corrected bug requiring other, specify boxes to be completed in the medication section when other, specify was not selected.
  • Cohort Comparison
    • This is a new feature that is now live to allow users to compare counts within their hospital from a specific cohort of patients to aggregate counts in PHTS. Detailed instructions of how to user this feature will be available soon. User’s may view and use this feature by logging into the wbde system, selecting ‘Reports’ in the top gray header and selecting Cohort Comparison.

Version 1.1.11 (January 3, 2020)

Version 1.1.11 (January 3, 2020)

Quality of Life / Family Impact Scale
  • Addition of these two data collection forms
Form 1 (Listing)
  • Question 2-3: Height and Weight
    • Removal of height/weight assign all buttons for the units of height and weight.
  • Question 5: Cardiac Surgical history
    • Added additional text to data entry screen stating: "VADs and ECMO should not be reported as a previous cardiac surgery. They should be reported in the status details if applicable (question 6). A Form 15 (MCSD Form) should be entered for each VAD and ECMO event."
Form 1RL (Relisting)
  • Question 2-3: Height and Weight
    • Removal of height/weight assign all buttons for the units of height and weight.
Form 1t (Transplant)
  • Question 4-5: Height and Weight
    • Removal of height/weight assign all buttons for the units of height and weight.
Form 6 (Infection)
  • Question 7: Intervention
    • Removed validation within form that does not allow users to select other answer options within this question if ‘supportive care only’ is selected.
    • Added additional text to data entry screen stating: “In most cases, if “Supportive care only” is selected no other options should be selected. The exception is the rare case when a patient has two viral infections and one is treated while one is not. Please ensure that the selection of “Supportive Care Only” is appropriate in this clinical scenario.”
Form 7 (Malignancy)
  • Question 2a-2b: Height and Weight
    • Removal of height/weight assign all buttons for the units of height and weight.
Form 8 (Post Tx Annual F/up)
  • Question 3-4: Height and Weight
    • Removal of height/weight assign all buttons for the units of height and weight.
Form 14 (Dialysis/Renal Transplant)
  • Question 4-5: Height and Weight
    • Removal of height/weight assign all buttons for the units of height and weight.

Version 1.1.10.1 (November 11, 2019)

Version 1.1.10.1 (November 11, 2019)

Patient Enrollment Form
  • Question 13b: Congenital Etiology
    • Added additional answer options to the drop down list of options and made minor text revisions:
      New options:
      • ALCAPA
      • Aortic Atresia
      • Aortic Regurgitation
      • DOLV
      • Heart Block
      • Marfan’s Syndrome
      • Mitral Atresia
      • Mitral Regurgitation
      • Pulmonary Stenosis
      • Shone’s Syndrome
      • Tricuspid Regurgitation
      Revised answer options
      • Arch Hypoplasia/Interruption/Hypoplasia > Arch Hypoplasia/Interruption/Hypoplasia / Coarctation
      • Asplenia > Asplenia or Right Isomerism
      • Polysplenia > Polysplenia or Left Isomerism
      • Hypoplastic Right Ventricle NOS > Hypoplastic Right Ventricle

Version 1.1.10 (November 4, 2019)

Version 1.1.10 (November 4, 2019)

System Changes
  • Fixed bug causing CSV button in reports tab not to work correctly
  • Fixed bug causing ‘View’ link on Sticky Notes dashboard to not work correctly
  • Optimized loading time for Site Dashboard
Form 1 (Listing)
  • Question 5: Previous Cardiac Surgery
    • Removed duplicate question asking if patient had a Pulmonary Valve Replacement
  • Question 11: Hemodynamics
    • Added range checks to all hemodynamics fields
Form 1RL (ReListing)
  • Question 12: Hemodynamics
    • Added range checks to all hemodynamics fields
Form 1t (Transplant)
  • Question 14: Hemodynamics
    • Added range checks to all hemodynamics fields
  • Question 6h: Has the patient had a tracheostomy between listing and transplant
    • New Question
Form 4 (Coronary Evaluation)
  • Question 9d: Stress
    • Added ‘Unchanged’ option
Form 7 (Malignancy/PTLD)
  • Question 6b.ii: Clonal Analysis Results
    • Added ‘Other, specify’ answer option
Form 8 (Post Tx Annual F/up)
  • Question 7: Medications
    • Added search box for medications and descriptive text under each medication in the search box to include all medications mapped to an individual drug
  • Question 15: Hemodynamics
    • Added range checks to all hemodynamics fields
  • Question 15k: Does the patient have a new tracheostomy since last follow-up
    • New Question
Form 10 (Death Form)
  • Question 5c.i.2: How long was therapy administered?
    • Added ‘Other, specify’ answer option

Version 1.1.9 (July 29, 2019)

Version 1.1.9 (July 29, 2019)

System Changes
  • Updated logo throughout data entry system

Form 2 (Donor Form)
Question 18: Inotropes at time of ‘harvest’
  • Changed the word ‘harvest’ to ‘procurement’

Form 4 (Coronary Evaluation)
Question 7: Intravascular Ultrasound Performed
  • Revised questions that display if ‘yes’ is selected to only ask for Stanford Score once rather than for each vessel. Highest Stanford score reported previously has been mapped to this new question
Question 4a: Indicate ISHLT CAV Score
  • Question removed, this score will be calculated rather than the user entering the score
Question 4a: Angio Results (previously 4b)
  • A new row has been added to the bottom of this grid that ask ‘Severe Branch Stenosis’. This has been added for the columns LAD, LCx, and RCA
Question 4b: Hemodynamics – NEW QUESTION
  • RAm
  • PCW/LV EDP
  • C.I.

Form 5 (Rejection)
Revised wording on form so that ‘Episode’ refers to the overall ‘Episode’ of rejection – the entire form, and the ‘Evaluation’ refers to the biopsies or echos within the rejection episode

Form 6 (Infection)
Question 7: Intervention
  • The free text of surgical therapy has been changed to a dropdown list of options
Question 9a: Current Patient Status for Significant Long Term Sequelae at 30 Days – NEW QUESTION
Question 9b: Details of Sequelae – NEW QUESTION
  • This was previously a free text when SLTS was selected in question 8 (Outcome at 30 Days Post Date of Infection). Now a list of checkbox options is provided.

Form 8 (Post Tx Annual F/up)
Question 8: Medications
  • Free text has been changed to a ‘check all that apply’ and existing free text entries have been mapped to the appropriate checkboxes
Question 9: Hypertension
  • An additional question has been added asking if patient has hypertension and treatment for hypertension

Form 10 (Death Form)
Question 2: Cause of Death
  • Question text has been changed to ask “Mode of Death’
  • ‘Other, specify’ entries have been mapped to appropriate check boxes
  • A few new answer options added

Form 15 (MCSD)
System rules added to form to not allow the form to be submitted if the discontinuation date is before the initiation date
Question 3b.i and 3b.iii: VAD Brands
  • Added answer option of HeartMate III

Version 1.1.8 (January 16, 2019)

Version 1.1.8 (January 16, 2019)

Sticky Notes
  • Sticky notes will now be able to be added at both the patient level and form level. Previously these were only available at the question level..

Patient Enrollment Form
Question 13: Primary Etiology
  • The list of congenital etiologies has been expanded to include some of the historical options from previous form revisions. A complete list is available on the printable forms and in the form manual.

Form 2 (Donor Form)
Question 17: Donor Serologies
  • The order of donor serologies has been changed to match the order these are collected in UNOS.

Version 1.1.7 (Released October 1, 2018)

Version 1.1.7 (Released October 1, 2018)

Patient Summary
  • An ‘Expand All’ and ‘Collapse All’ button has been added to the top of the patient summary to expand or collapse all years on the summary. Individual years can also be expanded or collapses by clicking on the year.

Screening Log / Demographics Form / Patient Enrollment Form
  • The Demographics Form and Screening Log have been combined into one form called the ‘Patient Enrollment Form’. At the top of the web based system, you will now see an ‘Enroll New Patient’ button rather than ‘Screen Patient’. Once the Patient Enrollment Form has been completed, the system will generate either the listing form or relisting form for the patient.
Question 9: Blood Type
  • ABO compatibility grid added above this question on the data entry screen.

Form 1 (Listing Form)
Question 6e: Was patient listed for an ABO incompatible transplant?
  • ABO compatibility grid added above this question on the data entry screen.

Form 1RL (Relisting Form)
Question 7e: Was patient listed for an ABO incompatible transplant?
  • ABO compatibility grid added above this question on the data entry screen.

Form 1t (Transplant Form)
Question 6e: Was patient transplanted with an ABO incompatible transplant?
  • ABO compatibility grid added above this question on the data entry screen.
Question 18: Technique of Transplant
  • This field previously allowed all three answer options to be checked. This will now only allow one box to be checked.

Form 2 (Donor Form)
Question 11: Donor Blood Type
  • ABO compatibility grid added above this question on the data entry screen.

Form 4 (Coronary Evaluation Form)
Question 8c: Left Ventricular Ejection Fraction
  • This field used to allow all numbers to be entered including decimals. This is now limited to whole numbers between 1 and 100.

Form 5 (Rejection Form)
Question 5: Indicate date of the end of the rejection episode
  • Added explanation text under the question that reads: “If rejection is ongoing at the time of death, the death date should be entered as the end date. A death form should also be completed.”

Version 1.1.6 (Released June 22, 2018)

Version 1.1.6 (Released June 22, 2018)

Site Dashboard
  • A link will now display on the Site Dashboard for the Data Collection Form Manual (http://www.uab.edu/medicine/phts/forms-and-manuals). This will open the form manual in a new tab for reference in data submission.

All Forms
  • Previously, all fields on all forms were required before initially submitting the form and upon resubmission if corrections were made. While this requirement is still the case for new forms, it is not the case for revisions as of this release. Once a form is in a ‘Completed’ status, the form can now be revised and resubmitted with corrections made and any additional data collection fields added since the event (that will display as blank), can remain blank.
  • A year/date in which data collection began for each data collection will begin to be added to each of the forms. This information is currently available in the data entry manual for reference until all dates have been added to the data entry screen.

Form 1 (Listing)
Question 14: Laboratory Values
  • Added range checks to all labs to indicate an abnormal values and impossible values.
  • Added additional data entry fields under each lab for values in other units to be entered

Form 1t (Transplant)
Question 12: Donor Specific Antigens and Results
  • Corrected typo changing ‘Antigens’ to ‘Antibodies’
Question 13: Laboratory Values
  • Added range checks to all labs to indicate an abnormal values and impossible values.
  • Added additional data entry fields under each lab for values in other units to be entered.

Form 1RL (Relisting)
Question 15: Laboratory Values
  • Added range checks to all labs to indicate an abnormal values and impossible values.
  • Added additional data entry fields under each lab for values in other units to be entered

Form 2 (Donor)
Question 8b: Donor Cause of death
  • Changed answer option ‘Cerebrovascular’ to ‘Cerebrovascular/Stroke’
Question 8c: Donor Mechanism of Death
  • Added answer option ‘Cerebral Embolism’
  • Added answer option ‘Intracranial Hemorrhage/Stroke (ICH)’

Form 8 (Post Transplant Annual Follow-up)
Question 12: Laboratory Values
  • Added range checks to all labs to indicate an abnormal values and impossible values.
  • Added additional data entry fields under each lab for values in other units to be entered

Form 12 (Pre Transplant Annual Follow-up)
Question 4a (Follow-up status change)
  • Change data entry view to display in rows to allow users to see multiple status changes on the screen.

Form 14 (Dialysis/Renal Transplant)
Question 3: Laboratory Values
  • Added range checks to all labs to indicate an abnormal values and impossible values.
  • Added additional data entry fields under each lab for values in other units to be entered

Version 1.1.5 (Released February 28, 2018)

Version 1.1.5 (Released February 28, 2018)

Site Dashboard
  • The 'Pending and In Progress Forms' Grid has a new column for the due date of the form. Forms that are past due will highlight in red. The form submission deadlines are also available as a PDF underneath this grid.

Patient Summary
  • Each form now has descriptions displayed at the patient summary level for viewing.

Form 1 (Listing)
Question 5: Specify cardiac surgery prior to listing.
  • Revised answer option 'AP Shunt' to be 'AP Shunt (including BT Shunt, Modified BT Shunt, Waterson Shunt, Pott's Shunt, Central Shunt, and MEE procedure)'

Form 12 (Pre Transplant Annual Follow-up)
Question 5a: Specify cardiac surgery during listing.
  • Revised answer option 'AP Shunt' to be 'AP Shunt (including BT Shunt, Modified BT Shunt, Waterson Shunt, Pott's Shunt, Central Shunt, and MEE procedure)'

Form 14 (Dialysis or Renal Transplant)
Question 2c: Date of last dialysis related to this event.
  • Added missing reason of 'Ongoing'. If dialysis is ongoing, the user may select this option and revise the form at a later date once dialysis has stopped.

Form 15 (Mechanical Circulatory Support Device)
Question 3b: VAD Type
  • Added additional answer option of 'Systemic VAD' (for single ventricle patients only)

Version 1.1.4 (Released November 21, 2017)

Version 1.1.4 (Released November 21, 2017)

Site Dashboard
  • The “Pending and In Progress Forms” grid has a new column for the form 'event date'.

Sticky Notes
  • Automatically delete sticky notes once a form is deleted.
  • Default list of users on sticky notes to only those with an ‘active’ status

Clinical Trial(s)
  • There will now be a sub section under the patient header which will show on the patient summary and on each form opened. There are a group of centers participating in the TEAMMATE clinical trial. This section will be used to track the patient’s ID number from the TEAMMATE trial and the enrollment date in the trial.
  • Clinical Trial Patient Tracking Guidelines

Printed Forms
Screening Log
Question 1: Is the patient under the age of 18 at time of listing?
  • If “no”, a warning message will appear that the patient is not eligible for PHTS and the submit button will not be displayed.

Questions 2: Was Informed Consent and HIPAA Authorization Obtained?
  • If “no”, a warning message will appear that the patient is not eligible for PHTS and the submit button will not be displayed.

Question 3: Was the patient listed for a heart/lung transplant?
  • If “yes”, a warning message will appear that the patient is not eligible for PHTS and the submit button will not be displayed.

Form 1 (Listing)
Question 13: Exercise test
  • Adding answer option of "Not Routinely Done"

Form 1RL (Relisting Form)
Question 5: Main Reason for Re-Listing
  • Adding answer option of “graft dysfunction <30 days in the absence of rejection, pulmonary hypertension or surgical complications”

Question 6: Contributing Reason for Re-Listing
  • Adding answer option of “graft dysfunction <30 days in the absence of rejection, pulmonary hypertension or surgical complications”
  • Adding answer option of “No Contributing Cause”

Question 14: Exercise test
  • Adding answer option of “Not Routinely Done”

Form 6 (Infection)
Question 1 and 2: Infection Definition
  • Revised definition to be one question that reads, “Is this infection a severe infection that requires IV therapy, hospitalization for infection >2 days, or escalation of care in an already hospitalized patient?”

Question 6 and 6a: Type of Infection and Infection Organism
  • Removed question 6 and free text in question 6a. Replaced with a list of options as a ‘check all that apply’. All existing entries have been mapped to the appropriate check box. A complete list of organism options is available on the printed data collection forms and the form manual with the 1.1.4 release.

Question 8: Location of Patient
  • Removed answer option of “Emergency Care, no admit”

Question 9: Intervention
  • Added answer option “Supportive Care Only”

Form 8 (Post Transplant Annual Follow-up)
Question 10: Exercise test
  • Adding answer option of “Not Routinely Done”

Form 12 (Pre Transplant Annual Follow-up)
Question 4: Status Changes
  • Users will not be able to select the same status for the old status and the new status. Only patient status changing from one status to a different status should be reported here.

Version 1.1.3b (Released October 23, 2017

Version 1.1.3b (Released October 23, 2017

At the launch of the web based data entry system, all answer choices for all questions were sorted alphabetically. This caused all yes/no questions to have the answer options as No/Yes/Unknown. Questions that have been added since launch have had the answer options added in the order of Yes/No/Unknown which has created some inconsistency. All Yes/No questions now have the answer options in the order of Yes/No/Unknown.

Version 1.1.3 (Released September 30, 2017)

Version 1.1.3 (Released September 30, 2017)

Sticky Notes
This release will have the addition of “sticky notes” and sticky note reporting to the web based data entry system. Users will have a new grid that will display at the bottom of their site dashboard which will show (1) active (2) resolved and (3) archived sticky notes. Sticky notes will be able to be assigned by both the user and the DCC to individual questions on any form. Users will be able to send sticky notes to other users at their site or to the DCC. The DCC will send sticky notes to sites for data integrity checks.

The “Compliance” tab released in version 1.1.2 has been renamed as a “Reports” tab. This tab will now allow the user to generate sticky note reports in addition to the compliance reporting.


Password Reset
This release will contain a password reset option for the user to reset their password.

Version 1.1.2 (Released August 9, 2017)

Version 1.1.2 (Released August 9, 2017)

Screening Log
Question 5: Is this a Japanese-American Transfer Patient
  • Additional question added to track patients that come from Japan to the US for transplant. This will only apply to a select group of centers that have patients transfer from Japan.

Form 1 (Listing)
Question 13 Exercise Test
  • Added “not done” as a missing reason option for Max VO2% Predicted for Age, Max VO2, and Respiratory Value at Peak.

Form 6 (Infection)
Questions 1 and 2 (criteria for when the form should be completed) are now treated as parent/child questions. The form will not display unless “yes” is answered to at least one question. If the answer is “no” to both, the form is not required.

Question 4: Drug Therapy at time of Infection
  • This has been changed from a repeating section to a ‘check all that apply’

Form 8 (Post Transplant Annual Follow-up)
Patient Summary
  • Follow up calendar year has been replaced with the expected follow-up window. A window will not be displayed on follow-ups that fall outside of the window.

Question 1: Was patient seen for follow-up this year?
  • New answer option added: Previously, transferred care could only be reported in question 7b. New answer option of “No, patient transferred care to another center (not at time of annual follow-up)” will allow for transfers to be reported that were not at the time of the follow-up, therefore not requiring the remainder of the form.

Form 12 (Pre Transplant Annual Follow-up)
Question 1: Was the patient seen for follow-up this year (NEW Question added).
  • If no, the form will function similar to the post-transplant follow-up (i.e. the remainder of the form will not be required).

Question 5: Previous Cardiac Surgery
  • Answer option “other, specify” added to drop down when “Valve Replacement” is selected.

Compliance Reporting added
There will now be a button at the top left of the data entry screen next to the “Screen Patient” button that is called “Compliance. This page will now show all users at a site in real time their annual follow-up form submission compliance for both pre and post transplant for three time points:
  1. Up to the current year (currently shows compliance since the center joined PHTS through December 2016. Will be updated automatically each January 1st to add the previous year)
  2. The previous calendar year (currently just shows 2016, will be updated automatically each January to the previous calendar year)
  3. Quarterly follow-up: Two quarters that have passed for the current year (currently we are in the third quarter. Data submission for all events through the second quarter (June 30th) was due on July 31st.) This will be updated automatically at the quarterly deadline (30 days after each calendar quarter).
Explanations of each column of each tab and how they are calculated are included at the bottom of each tab in the system.

The fourth tab is called “All Followups”. If the user visits this tab and clicks “Download Followups”, an Excel file will be downloaded with all of the pre and post transplant follow-up forms for that site. The user can then filter the different columns to look at a number of different subsets such as missing follow-up forms. Please note that this is NOT a data download of the data actually entered into the follow-up forms. Instead, it includes key information about the follow-up forms such as the patient information and the follow-up date and form status to help the user better keep up with expected and completed annual follow-up forms.

Version 1.1.1 (Released March 27, 2017)

Version 1.1.1 (Released March 27, 2017)

Form 3
Question 10: Other immunosuppressants
  • This question has been changed to a repeating section so multiple immunosuppressants can be added.

Form 5
Replaced all instances of “ACR score” and “AMR score” with “ACR Grade” and “AMR Grade”.

Version 1.1.0 (Released August 2, 2016)

Version 1.1.0 (Released August 2, 2016)

Overall System Changes
Save For Later
  • Each form in the system has a “Save for Later” button at the bottom of the form. This button has now been moved to directly above the “Session Time Remaining” which sits in the bottom right corner of the webpage so the user can click this button at any point during the form.
  • This button also now serves a second purpose. Once this is clicked, the screen will return to the patient summary. A green pop-up will show in the top middle of the patient summary that says “Form Saved: Click here to continue editing”. This will appear for 10 seconds. Once clicked, it will return the user to the form that was just saved.

Patient Header
  • On each form, the patient header will now display the 1st, 2nd, and 3rd listing and transplant information (if applicable). If not applicable, only the listing and transplant information entered will appear in the header.

Site Dashboard
Patient List Grid
  • This grid will now default to only display the "Active" patients. Filter options have been added for the user to filter between Active, Inactive, Dead, Removed from List, Transferred, and Transplanted.

In Progress Forms Grid
  • This grid will now have a column for "Old Patient Number". A column has also been added for "Updated By" where the username will display of the last person that updated the form.

Screening Log
Question 4: Is the patient being transplanted at an institution in which they will not receive any follow-up care after surgery?
  • Question removed from form. This criteria is no longer part of the inclusion/exclusion criteria

Demographics Form
This form will now generate automatically when the Screening Log is validated. This form has been removed from the "Add Form" button and will also not be able to be deleted.

Form 1 (Initial Patient Listing)
This form now has a limit of one form per patient. Once a Form 1 has been added, the option will be blocked out in the "Add Form" dropdown.

Question 5: Surgery Details
  • If Valve Replacement is selected there is a drop down of four options. "Other, specify" has been added to this list of options.

Question 6b: Status Details
  • Current question is a 'check all that apply'. The 'check all that apply' has been changed to the format of individual questions as follows:
    • 6b. Was patient in or out of hospital at time of listing? (In Hospital/Out of Hospital)
    • 6b.i. Was patient in the ICU at time of listing? (No/Yes/Unknown)
    • 6b.ii. Did patient require continuous invasive mechanical ventilation? (No/Yes/Unknown)
    • 6c. Did the patient require continuous inotropes at time of listing? (No/Yes/Unknown)
    • 6c.i. Inotropes Dose? (Dose Unknown/High Dose or Multiple IV)
    • 6d. Did the patient have ductal dependent pulmonary or systemic circulation with ductal patency maintained by stent of prostaglandin infusion? (No/Yes/Unknown)
    • 6e. Was patient listed for ABO Incompatible? (No/Yes/Unknown)
    • 6f: Was patient on VAD or ECMO at time of listing? (VAD/ECMO/Not on support at time of listing)
    • 6g. Was patient listed for DCD (Donation after Cardiac Death) organ? (No/Yes/Unknown/This is not current practice at our center)

Form 1RL (Patient ReListing)
Question 6b: Status Details
  • Current question is a 'check all that apply'. The 'check all that apply' has been changed to the format of individual questions as follows:
    • 7b. Was patient in or out of hospital at time of listing? (In Hospital/Out of Hospital)
    • 7b.i. Was patient in the ICU at time of listing? (No/Yes/Unknown)
    • 7b.ii. Did patient require continuous invasive mechanical ventilation? (No/Yes/Unknown)
    • 7c. Did the patient require continuous inotropes at time of listing? (No/Yes/Unknown)
    • 7c.i. Inotropes Dose? (Dose Unknown/High Dose or Multiple IV)
    • 7d. Did the patient have ductal dependent pulmonary or systemic circulation with ductal patency maintained by stent of prostaglandin infusion? (No/Yes/Unknown)
    • 7e. Was patient listed for ABO Incompatible? (No/Yes/Unknown)
    • 7f: Was patient on VAD or ECMO at time of listing? (VAD/ECMO/Not on support at time of listing)
    • 7g. Was patient listed for DCD (Donation after Cardiac Death) organ? (No/Yes/Unknown/This is not current practice at our center)

Form 1t (Transplant)
Question 6b: Status Details
  • Current question is a 'check all that apply'. The 'check all that apply' has been changed to the format of individual questions as follows:
    • 6b. Was patient in or out of hospital at time of transplant? (In Hospital/Out of Hospital)
    • 6b.i. Was patient in the ICU at time of transplant? (No/Yes/Unknown)
    • 6b.ii. Did patient require continuous invasive mechanical ventilation? (No/Yes/Unknown)
    • 6c. Did the patient require continuous inotropes at time of transplant? (No/Yes/Unknown)
    • 6c.i. Inotropes Dose? (Dose Unknown/High Dose or Multiple IV)
    • 6d. Did the patient have ductal dependent pulmonary or systemic circulation with ductal patency maintained by stent of prostaglandin infusion? (No/Yes/Unknown)
    • 6e. Was patient transplanted as ABO Incompatible? (No/Yes/Unknown)
    • 6f: Was patient on VAD or ECMO at time of transplant? (VAD/ECMO/Not on support at time of listing)

Question 11: B Cell and T Cell Results
  • Changed to grid format.

Form 8 (Post Transplant Annual Follow-Up)
Annual Follow-up Form Generation
  • Form 8s are due at the time of the transplant anniversary +/- 90 days. This form will now generate automatically each night for transplanted patients at the time of the transplant anniversary. The date of follow-up will pre-populate as the patient’s transplant anniversary and should be edited to reflect the actual follow-up date. The generated form will appear in the "In Progress Forms" grid on the Site Dashboard with a status of "Not started". The form will also indicate the follow-up year (Year 1, Year 2, etc). This form can still be added manually if needed.

Question 1: Was patient seen for follow-up this year
  • Answer choices have been revised to be:
    • No, patient was not seen this year or the patient follow-up falls outside of the follow-up window (+/- 90 days of the transplant anniversary)
    • Yes, patient was seen this year

Question 8: Follow-up Medications
  • Added instructional text “Do not have to include PRN, topical, inhaled, or nebulizer medications.”

Question 15: Events since transplant or last Form 8
  • Added text under each event: “If yes, complete form…”

Form 10 (Death)
This form now has a limit of one form per patient. Once a Form 10 has been added, the option will be blocked out in the "Add Form" dropdown.

Form 12 (Pre Transplant Annual Follow-Up)
Form 12s will now generate automatically at the time of the listing anniversary. This form can still be added manually if needed.

Question 7: Was patient permanently removed from the transplant waiting list since listing or last form 12?
  • The option "Not applicable" has been added for patients that are removed from the list because of transplant or death.

Version 1.0.7 (Released May 26, 2016)

Version 1.0.7 (Released May 26, 2016)

Screening Log
Initials required to be three characters and all capital letters.

Question numbering fixed.

Form 1 (Initial Patient Listing)
Question 7: Infectious Disease Screening
  • Changed to grid format

Question 8: Medical History, Mitochondrial Disorder
  • Added child question with three options (Barth’s, Unspecified, and Other, specify)

Question 13: Respiratory Value at Peak
  • Added descriptive text under question, "RER or Respiratory Quotient: R Value at peak is the respiratory quotient of carbon dioxide production divided by oxygen consumption, and is used as an index of how vigorously the patient exercised. A value above 1.05 is generally considered to represent an adequate effort."

Form 1RL (Patient ReListing)
Question 8: Infectious Disease Screening
  • Changed to grid format

Question 9: Medical History, Mitochondrial Disorder
  • Added child question with three options (Barth’s, Unspecified, and Other, specify)

Question 14: Respiratory Value at Peak
  • Added descriptive text under question, "RER or Respiratory Quotient: R Value at peak is the respiratory quotient of carbon dioxide production divided by oxygen consumption, and is used as an index of how vigorously the patient exercised. A value above 1.05 is generally considered to represent an adequate effort."

Form 1t (Transplant)
System will automatically generate a Form 2 (Donor) and a Form 3 (Initial Immunosuppression) form when a Form 1t (Transplant) form is submitted

System will notify user if a Form 1t (Transplant), Form 2 (Donor), or Form 3 (Initial Immunosuppression) is missing for any patient.

Question 10a. 2: How long was therapy administered
  • "specify" box added to drop down if the option "only for a pre-specified time/number of treatments, specify" is selected

Form 2 (Donor)
Question 17: Donor Serologies
  • Changed to grid format

Question 18: Donor on Inotropes, Pressors, or Thyroid Hormones at time of recovery/harvest
  • Changed to grid format

Form 4 (Coronary Evaluation))
Question 4: Angiography Results
  • Changed to grid format to match the way this question was collected previously

Form 5 (Rejection)
Question 5c: Select Therapy Used
  • "specify" box added as a drop down for "other, specify" option

Form 8 (Post Transplant Yearly Status Report)
Question 10: Respiratory Value at Peak
  • Added descriptive text under question, "RER or Respiratory Quotient: R Value at peak is the respiratory quotient of carbon dioxide production divided by oxygen consumption, and is used as an index of how vigorously the patient exercised. A value above 1.05 is generally considered to represent an adequate effort."

Question 14: Viral Studies
  • Changed to grid format

Form 15 (Mechanical Circulatory Support Events)
Question 3b: VAD Side and Brand
  • VAD brands have been customized for the Left side, Right side, and TAH.

Version 1.0.6 (Released March 28, 2016)

Version 1.0.6 (Released March 28, 2016)

Scrolling Timer
There is a system timeout built into the system to time the user out after 45 minutes of inactivity. Activity is navigating from one screen to another or anything that will change the URL. Activity is not entering data on one screen. This version update will include a scrolling timer. The timer will be located at the bottom right corner of the screen and will count down from 45 minutes. This timer will appear on every screen you navigate to in the web based system including the pages that are not for data entry (for example, the Site Dashboard). When there are 5 minutes remaining, a notification will pop up and ask you if you want to stay and continue or if you would like to leave that page. If you click to stay and continue working, the timer will reset. If you do not click anything, after you have been on a screen for 45 minutes the system will timeout. There is no auto save built into the system so if you are timed out, you will lose any unsaved data entry.

Demographics Form
Question 3: Race
  • Data was not saving when entered into the "other, specify" field. This has been corrected so the data will now correctly save when the form is either “Saved for Later” or "Validated and Saved"

Form 10 (Death)
Question 3: Contributing Cause of Death
  • This has been changed to a "check all that apply" instead of a "check only one" repeating section. The child questions of some of the answer choices are still being treated as a "check only one".
  • The answer choice "Trauma/Accidental" has a specify box added.

Question 6: Cardiac Pathology Found
  • If "rejection, acute" is selected, the form will display two more questions asking the ACR and pAMR scores. There has been a journal citation added to these two questions.

Version 1.0.5 (Released March 4, 2016)

Version 1.0.5 (Released March 4, 2016)

Print View
Print view on all forms fixed so that question numbering and question text does not overlap

Form 1t (Transplant)
Question 8: Did this patient have a virtual crossmatch
  • Parent/child relationship fixed so that if answered “positive”, section 10 will appear.

Form 3 (Initial Immunosuppression)
Question 9: Steroids
  • Parent question added asking "Was patient given post-operative steroids? Yes/No/Unknown"
  • "Date of first post-op dose" is now a child of new parent question
  • "Daily dose at 30 days" is now a child of the new parent question
  • Add "mg" after "Daily dose at 30 days" text entry field

Form 4 (Coronary Evaluation)
Question 4: Angio Results: if abnormal, indicate ISHLT CAV score
  • Added "0" and "Not Graded" as answer choices
  • Added journal reference (J Heart Lung Transplant July 2010; 29(7):717-27) as descriptive text under question
  • Added the following descriptive text under question
    • ISHLT CAV 0 (Not significant): No detectable angiographic lesion
    • ISHLT CAV 1 (Mild): Angiographic left main (LM) <50%, or primary vessel with maximum lesion of <70%, or any branch stenosis <70% (including diffuse narrowing) without allograft dysfunction
    • ISHLT CAV 2 (Moderate): Angiographic LM <50%; a single primary vessel >70%, or isolated branch stenosis >70% in branches of 2 systems, without allograft dysfunction
    • ISHLT CAV 3 (Severe): Angiographic LM >50%, or two or more primary vessels >70% stenosis, or isolated branch stenosis >70% in all 3 systems; or ISHLT CAV 1 or CAV 2 with allograft dysfunction (defined as LVEF <45% usually in the presence of regional wall motion abnormalities)

Question 5: Coronary Flow
  • Added descriptive text under question Abnormal Fractional Flow Reserve (FFR) is defined as

Question 5: If Left Main, Median Intimal Thickness (MIT)
  • Changed "Median" to "Maximal"

Question 5: If LAD, Median Intimal Thickness (MIT)
  • Changed "Median" to "Maximal"

Question 5: If LCx, Median Intimal Thickness (MIT)
  • Changed "Median" to "Maximal"

Question 5: If RCA, Median Intimal Thickness (MIT))
  • Changed "Median" to "Maximal"

Form 5 (Rejection)
Question 3: Biopsy prior to reject event: ACR Score
  • Change answer choice “0R” to “0”

Question 3: Biopsy prior to rejection event: AMR Score
  • Add the following descriptive text
    • 2013 revised ISHLT scoring system for pAMR:
      J Heart Lung Transplant 2013 Dec 32(12):1147-62.)
      pAMR: pathologic antibody mediated rejection (0, 1h, 1i, 2, 3)

Question 3: Biopsy prior to rejection event: pAMR score
  • Add the following descriptive text
    • 2013 revised ISHLT scoring system for pAMR:
      J Heart Lung Transplant 2013 Dec 32(12):1147-62.)
      pAMR: pathologic antibody mediated rejection (0, 1h, 1i, 2, 3)

Question 5c: Rejection Event: Therapy used
  • Removed “ALG”, “ATG”, and “ATS” and answer choices. Replaced with “ATG or ATGAM”

Question 7: Baseline immunosuppressive therapy at time of resolution of rejection event
  • Changed from a ‘check only one’ repeating section to a ‘check all that apply’
  • Changed “Azathioprine” to “Azathioprine (Imuran)”
  • Changed “Cyclosporine” to “Cyclosporine (Sandimmue, Neoral, Gengraf, CSA, CyA)”
  • Changed “Mycophenolate” to “Mycophenolate (Cellcept, Myfortic)”
  • Removed “plasmapheresis” as an answer choice
  • Changed “Sirolimus” to “Sirolimus (Rapamycin, Rapamune)”
  • Changed “Tacrolimus” to “Tacrolimus (Prograf, FK506)”
  • Changed “Cytoxan” to “Cytoxan (cyclophosphamide)”

Form 12 (Pre Transplant Annual Follow-Up)
Question 4: Status changes
  • Parent question added asking “Did the patient have any status changes since listing or the last form 12”. Status change section will now only appear if answered “yes”.

Version 1.0.4 (Released December 31, 2015)

Version 1.0.4 (Released December 31, 2015)

Form 1 (Initial Patient Listing)
Question 5: Surgeries Prior to Listing
  • “previous heart transplant” removed from answer choices
  • Question “Valve Replacement, Aortic Valve” reworded to ask “Homograft Tissue in Aortic Valve Replacement? No/Yes/Unknown”
  • Question “Valve Replacement, Pulmonary Valve” reworded to ask “Pulmonary Valve Replacement? No/Yes/Unknown”

Question 6a: Status at Listing
  • Removed “2” as an answer choice for Brazil

Question 8a: Medical History: GI/Nutrition
  • Added “Other, specify” option

Question 9: Primary Insurance
  • Reordered answer choices
  • Added descriptive text explaining each type of insurance

Question 11a: Hemodynamics Prior to Listing
  • Rs, PVRI changed to Rp, PVRI

Form 1RL (Patient ReListing)
Question 9: Medical History: GI/Nutrition
  • Added “Other, specify” option

Question 10: Primary Insurance
  • Added descriptive text explaining each type of insurance

Question 12a: Hemodynamics Prior to Relisting
  • Rs, PVRI changed to Rp, PVRI

Form 1t (Transplant)
Question 14: Hemodynamics closest to transplant
  • Fixed typos in descriptive text

Question 14: Hemodynamics at time of transplant
  • Rs, PVRI changed to Rp, PVRI

Question 15: Inotropes, Pressors, and Thyroid Hormones
  • Changed section from a ‘check only one’ repeating section to a ‘check all that apply’

Form 3 (Initial Immunosuppression)
Question 1: Induction Agents
  • Previous free text field for induction agent changed to a list of choices to select agent from

Form 4 (Coronary Evaluation)
Question 9: Dobutamine or Exercise Stress Echo
  • Added parent question asking “was dobutamine or exercise stress echo performed? Yes/No/Unknown”

Form 8 (Post Transplant Yearly Status Report)
Question 5: Were Hemodynamics Performed
  • Added parent question asking “Were hemodynamics performed? Yes/No/Unknown”

Version 1.0.3 (Released November 19, 2015)

Version 1.0.3 (Released November 19, 2015)

Fixed bug not allowing Screening Log to ‘Validate and Save’ correctly

Version 1.0.2 (Released November 5, 2015)

Version 1.0.2 (Released November 5, 2015)

Date validations bug addressed. All date fields must be entered using a 4-digit year

Patient summary
  • Made form status field a uniform width

All forms
  • Bug fixed in confirmation message when user attempts to leave form
Form 5 (Rejection)
Question 1 (beginning date of rejection episode) removed

Question 3: Added section header “Biopsy Prior to Rejection Event”

Question 3: Biopsy prior to rejection event ACR scores
  • Mapped previously collected ISHLT scores to 2004 ISHLT scoring system of 0, 1R, 2R, 3R, or Unknown

Question 4: Which antibodies were tested and what were the results
  • Added “unknown” as an answer choice

Question 4: HLA class I and/or Class II DSA Result, positive
  • Added “unknown” as an answer choice

Question 4: Non-HLA Ab Result, positive
  • Added “unknown” as an answer choice

Question :4 HLA Class I and/or II DSA Result
  • Added “unknown” as an answer choice

Question 4: Non HLA Ab Result
  • Added “unknown” as an answer choice

Question 4: Isoagglutinin (A or Ab) to ABO-I graft
  • Added “unknown” as an answer choice

Question 7: Baseline immunosuppressive therapy at time of resolution of rejection
  • Parent yes/no question removed
  • Change from a ‘check only one’ repeating section to a ‘check all that apply’
  • Change “Other” to “Other, specify”
  • Change “Cytoxan” to “Cytoxan (cyclophosphamide)”
  • Rearrange order of answer choices

Version 1.0.1 (Released October 26, 2015)

Version 1.0.1 (Released October 26, 2015)

Form 1 (Initial Patient Listing)
Question 6b: Status Details
  • Answer choices modified to not allow “in hospital” and “out of hospital” to be checked at the same time

Question 6b: Requires continuous mechanical ventilation
  • Answer choices not saving correctly. Bug fixed

Question 9: Primary Insurance
  • Donation removed as an answer choice (Charitable Donation remains as an option)

Form 1RL (Patient ReListing)
Question 15: Laboratory Values
  • “T Protein” changed to ask “Total Protein”

Form 1t (Transplant)
Question 15: Inotropes, Pressors and Thyroid Hormones
  • Removed “levophed” as an answer choice
  • Changed “Norepinephrine” to “Norepinephrine (Levophed)”

Form 4 (Coronary Evaluation)
Question 2: Non Invasive test prior to this date indicated coronary disease, specify test
  • Added “Exercise Stress Echo” as an answer choice

Question 4b: Left Main Coronary Artery (L Main)
  • Answer choices modified to not allow “Normal” to be checked with any other options

Question 4b: Left Anterior Descending (LAD)
  • Answer choices modified to not allow “Normal” to be checked with any other options

Question 4b: Left Circumflex (LAD)
  • Answer choices modified to not allow “Normal” to be checked with any other options

Question 4b: Right Coronary Artery (RCA)
  • Answer choices modified to not allow “Normal” to be checked with any other options

Question 4b: Posterior Descending Artery (PDA)
  • Answer choices modified to not allow “Normal” to be checked with any other options

Form 6 (Infection)
Question 4: Child question of selecting the location of infection as “blood, culture positive” reworded to ask “Was the blood infection directly attributed to the presence of a central line (ie. Organism cultured from blood is not related to an infection at another site)? Yes/No/Unknown”

Form 8 (Post Transplant Yearly Status Report)
Question 5: Hemodynamics
  • Removed RAP/CVP as a question

Question 15: Events
  • “Malignancy” edited to ask “Malignancy/PTLD”

Form 9 (Coronary Revascularization)
Question 4: Procedure
  • Add “Other, specify”

Question 4: Comments on Procedure
  • Add Missing Reason option of “None”

Form 10 (Death)
Question 5b: Status Details
  • Answer choices modified to not allow “in hospital” and “out of hospital” to be checked at the same time

Form 12 (Pre Transplant Annual Follow-Up)
Question 5: Cardiac Surgery: d-transposition of the great vessels: Arterial Switch Operation While Listed
  • Added Missing Reason option of “Unknown”

Version 1.0.0 (Released October 7, 2015)

Version 1.0.0 (Released October 7, 2015)

Initial launch of system