State of the Network
FON and NPC-QIC will be merging into this united learning network
What is SV-ONe (Single Ventricle Outcomes Network)?
This form must be checked and marked as complete to indicate enrollment data is ready for review
What is the Enrollment review request?
A Longitudinal Update form should be completed for each record at this minimum timeframe
What is annually since the date of enrollment or previous update?
An echocardiogram reports regurgitation for the mitral valve as mild-to-moderate and mild for the tricuspid valve. The form will indicate this as the "Atrioventricular valve regurgitation".
What is mild-to-moderate?
The newly structured meeting occurring monthly that one center representative knowledgeable in data entry should attend is this
What is the FON Monthly Center Engagement Meeting (MCEM)?
Initial data quality checks have begun on enrollment data at each center having this minimum number of data records marked as "review ready"
What is 20?
These types of surgeries should be recorded in the Surgical Log
What are ANY or cardiac and non-cardiac surgeries?
Emma complained of recurrent palpitations and was issued an event monitor. This data is included in this form.
What is the Arrhythmia Eval and Proc form?
Chelsea performed an exercise test that was not included in the Exercise Test form because of this
What is no VO2/metabolic measurements were taken?
The monthly issue containing information about upcoming FON events, shout-outs, and milestones is this
What is the FON Newsletter?
The number of patients entered in the registry is this.
A. 700-999
B. 1000-1200
C. 1201-1500
What is C. 1201-1500 (1472 as of 11/13/24)?
Leela underwent a 20mm non-fenestrated extracardiac Fontan. Data entered for the "Initial Fontan Surgery," "Conduit Size," and "Fenestration at the time of initial Fontan surgery" are these
What are "TCPC, External Conduit," "20mm," and "No"?
All repeated lab results (e.g., CBC) collected for a longitudinal update should be entered except this one
What is the INR?
One INR result can be entered that represents the median of all results
The "Fontan pressure mean" of a Cardiac Cath isn't listed in the narrative report. The mean may be presented in this place instead.
What is the Cardiac Cath diagram?
Information or reports entered into the Source Data Upload Tool in the registry do not need this prior to uploading
What is de-identification?
The number of participating centers in FON is this
A. 20-30
B. 31-40
C. 41-50
What is B. 31-40 (38 as of 11/13/24)?
Jacob's previous episode of SVT arrhythmia was not included in the Medical History form because of this
What is a peri-operative arrhythmia occurring less than 30 days after surgery?
Patrick was weaned off budesonide since his enrollment but had a recurring PLE episode and restarted it. Next steps for data entry include these.
What are updating the longitudinal update form, the medication log with the end date and new start date for budesonide, and the complications log?
Data values reported for this location are acceptable to enter for the "ascending aorta flow analysis" in a Cardiac MRI if the ascending aorta is not specified.
What is the aortic valve?
An educational platform for registry forms with recorded presentations are known as these
What are the FON Forums?
The number of participating centers who have entered data is this
A. 10-20
B. 21-30
C. 31-40
What is B. 21-30 (26 as of 11/13/24)?
Tanner's previous history of muscle weakness is recorded as this in the Emotional Health/Neurodevelopment form
What is a Motor Disorder?
Brett is admitted to the hospital monthly for enzyme replacement therapy via IV. The admission duration is 2 hours. These admissions are not included as a Hospitalization because of this.
What is an admission less than 24 hours or does not include an outcome that impacts the course of care.
A Cardiac CT was performed but no volumes are reported. The Cardiac CT is still entered based on these criteria.
What are the cardiac CT was performed with EKG gating and/or the presence of dilation, collaterals, stenosis, or thrombus is in the report?
Coming soon are two new tools for center data tracking and automation known as these
What are the FON Dashboard and FON EHR Integration?