(Re)-Planning
Patient and public involvement in studie design
ERC Ethics guideline 2025 recommend it, what can we learn from you? Time point? Painful memories?
Age
Age group in your studies 12-50yrs, why? Some guidelines use <35 years? Whats the difference in SCD in <35yrs and >35years? Your median age was 43 (range 37-47) (study I-II), what does that tell us about agespan?
Genetic testing
23% in survivors, 50% in deceased. Any positive result? Standardized package?
How to make it 100%, or is it not relevant in 100%?
Screening
Based on your results in S1, exercise-related CA was 0.4 per 100.000 in <35yrs, 1.3 for >35yrs and 7.8 per 100.000 for all OHCA. Should we screen? Is there a cutoff in numbers?
Participation
StudyI-Figure 1. 91 (23%) did not want to participate. 195 (31%) did not respond. One of the highest rate of actively saying no I have seen. How did that affect your design and results? Time point after CA? Any other way to get data?
Research question
page 39-Study I- What is the potential (of the) data-sources to identify exercise-related SCA?
Figure 6, page 54. What did you learn from the results? 720 ==> 63 cases (but 810 non cardiac excluded...). Re-classification to a new definition (your own?) Role of media (poor source)? Validation of NorCA?
Autopsy
Do you follow a standardized protocol in Norway? Same intent with autopsy based on police vs clinicians request? Easy to interpret aetiology based on autopsy?
Symptoms
Figure 8. page 56. Quite common in your survey? Validation of the form? General population? Recall bias? Hindsight bias?
S2-Mutiple source approach- validation or symptoms or just added upon each other?
Ethical permission
Page 87. Your ethical permission was decline first. Why? How did it affect your studies?
Cardiac cause
How is cardiac cause decided upon in IRL? Why only include them? Unknown?
SII- "excluded 53 not enough data" but SUDS was "if not cause found", how does this align?
And then, "exercise-related", you often found disparities in NorCA-survey-the team. Can we trust these ("cardiac cause", exercise-related") categorizations??
ECG
Did you use it in your study, why not? Is it a controversy to use it in screening, why?
ESC recommendations?
Exercise or not
When does exercise become a risk-event? Any type? Any age? Any preceeding symptoms? Any volume?