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Survey: The Global Landscape of SCD and Approach to Case Work-Up in Latin America
For this survey it would be 6 to 10 minutes.
1.
Step 1 What is your country of practice?
Argentina
Bolivia
Brasil
Chile
Colombia
Costa Rica
Cuba
República Dominicana
Ecuador
El Salvador
Guatemala
Honduras
México
Nicaragua
Panamá
Paraguay
Perú
Puerto Rico
Uruguay
Venezuela
Otro (especificar)
2.
Step 2 - What is your field of expertise?
(Select all that apply)
Clinical Cardiology
Arrhythmology (only clinics)
Electrophysiology and Pacemakers
Other Interventional Cardiology
Echocardiography
Other
3.
Step 3 - How would you best define your years of experience in your field?
Early career (<10 years)
Intermediate (10-20 years)
Senior (>20 years)
4.
Step 4 - What type of healthcare setting do you currently work in? (Select all that apply)
Private clinic
Public clinic
Private hospital ward
Public hospital ward
Private hospital ER/ICU
Public hospital ER/ICU
University hospital
5.
Step 5 - Do you consider the response to out-of-hospital cardiac arrest (OHCA) in your region to be adequate?
Yes, the emergency system is efficient and well-equipped
Partially, but there are limitations in response time or training
No, significant gaps exist in response time and resources
I am not familiar with the OHCA response in my region
6.
Step 6. Are there enough educational initiatives to train healthcare professionals and the general public in basic life support (BLS) and advanced cardiac life support (ACLS)?
Yes, training programs are widely available
Some initiatives exist, but they are not frequent enough
No, training opportunities are very limited
I am not aware of any educational programs in my region
7.
Step 7. Are automated external defibrillators (AEDs) sufficiently available in public spaces in your country?
Yes, AEDs are commonly found in public spaces and well-maintained
There are some AEDs, but they are not widely distributed
No, AEDs are rarely found in public areas
I am not sure about AED availability in my region
8.
Step 8. What do you see as the biggest barrier to improving the survival of OHCA in your country?
Lack of public awareness and CPR training
Delayed emergency medical response times
Limited availability of AEDs in public spaces
Poor coordination between emergency services and hospitals
All of the above
9.
Step 9 - How is cardiogenetics structured in your region?
There are enough specialized cardiogenetics centers with access to genetic counseling and testing
There are few specialized cardiogenetics centers with limited access to genetic counseling and testing
Genetic testing is available, but there is no structured cardiogenetics service
Genetic testing is available only in private settings, with limited or no access in public healthcare
10.
Step 10 - Have you previously handled cases of Aborted sudden cardiac death in individuals under 40 years old?
No
Yes If yes, how many cases?
<10
10-100
>100
11.
Step 11 - Do you know what molecular autopsy means?
No
Yes, but I have never handled a case
Yes, I have handled a case
Yes, I have handled more than one case
12.
Step 12 - Is molecular autopsy available in your region?
There is a forensic service with a protocol for molecular autopsy
There is a forensic service, but no specific protocol for molecular autopsy
There is a forensic service, but I am unaware of existing protocols
Only traditional forensic services exist
Traditional forensic services are inadequate in my region.
13.
Step 13. In a patient with unexplained sudden cardiac death (SCD) who did not survive, when and how do you consider genetic testing?
Always, regardless of clinical context or victim’s age
Only if there is a family history of SCD or known genetic conditions
Only if the autopsy is suggestive of a cardiac inherited disease or if the autopsy is inconclusive and there is suspicion of channelopathies or genetic concealed cardiomyopathies
I am not experienced in this approach and there are no cardiogenetics services available in my region for this purpose
I would never request genetic testing in these cases
14.
Step 14 - Do you have any experience with genetics in cardiology?
No
Yes
15.
Step 14 b- If you have any experience with genetics in cardiology, in what setting? (Select all that apply)
During medical school
During specialty training
In-person course
Online course
It is my field of expertise or part of my routine.
16.
Step 15 - If you encounter an unexplained SCD case in a patient under 40 years old, what would your approach be? (Select all that apply)
Clinical screening of family members
Obtaining post-mortem samples
Genetic testing of family members based on clinical findings
Genetic testing of family members regardless of clinical findings
17.
Step 16 - In your opinion, what are the possible ways to collect samples for molecular testing in deceased individuals? (Select all that apply)
Blood
Saliva
Cardiac biopsy
Skin biopsy
Hair
I don’t know
18.
Step 17 - In your opinion, what is the relevance of molecular autopsy in the context of SCD in young individuals?
Necessary and with significant clinical impact
Relevant only in selected cases
Has little impact on clinical practice
Still in its early stages and not yet relevant in clinical practice
19.
Step 18. What initiative would be most impactful in improving SCD investigation in Latin America?
Providing access to genetic testing and molecular autopsy in unexplained SCD cases
Establishing standardized regional guidelines for SCD investigation
Expanding medical training to improve recognition and management of genetic syndromes related to SCD
Developing national databases and registries for SCD cases
All of the above
20.
Step 19 - If a multicenter protocol for genetic study of sudden cardiac death in young individuals were established, would you be interested in participating?
Yes
No
21.
This is a LAHRS survey which results will be analyzed and presented in scientific instances. I consent for this information to be used to this end
Yes