Unfortunately, the first indication of SADS conditions for many families is an unexpected death. Due to the genetic aspect of these conditions, we recognize this is an important opportunity to save the lives of other at-risk family members.
We have designed a surveillance system through Google Alerts using key words related to sudden death, etc. In addition to daily surveillance, we also receive referrals of cases from families and physicians in which the death seems to be related to a SADS condition. The following individuals are contacted immediately in response to a recent death:
Medical Examiner: information about sample storage, recognizing SADS conditions, and information on the SADS Foundation is sent to the ME listed in the obituary.
School Nurses/Administration: if the event happened in a young person, or on the campus of a school, information about SADS conditions, support and treatment programs, and other educational materials is sent to the school administration and nurse.
Coaches/Athletic Advisors: if the death occurred during a sporting event or practice, information about SADS conditions, risk assessment forms, and other information is sent to the coach or athletic directors involved.
Families: if contact information is provided, or able to be found via social media and other internet avenues, we reach out to them to offer grief and other support services, physician referrals, information on genetic testing and research laboratories, as well as other information.
If you hear of a death, or even if you just see an obituary of a sudden death in a young person that seems to fit the profile of a SADS condition, please send the information email@example.com call 1-800-STOP-SADS.
Help us build our database of Coroners and Medical Examiners so we can get in contact as quickly as possible upon learning of a sudden death:
Find the contact information for your local medical examiner/coroner via google, your state health department, etc. We can help you get started, just give us a call or email.
Email theSADS Foundationor call 800-786-7723 with the contact information for your ME/Coroner.
We will then send you the SADS ME/Coroner information kit to provide to your ME/Coroner or if you prefer, we can send them the information directly.
Remember… If the autopsy findings are normal or inconclusive: i.e., a “mild myocarditis” or a “slight cardiomyopathy”
Blood should be collected in glass or plastic EDTA (purple top) tubes (freeze at -80 degrees C immediately after collection or no more than 5 days after collection.) At least two lavender top tubes (EDTA) each containing 5 – 10 mL of whole blood should be collected.
Do not treat samples with formalin.
If tissue is saved, cardiac tissue is usually preferred. This should also be frozen at -80 degrees C immediately after collection.
If commercial genetic testing can not be pursued, contact SADS to see if there are any research laboratories providing post-mortem genetic testing.—We just had a family with a negative LQTS test discover their CPVT gene in a research setting.