Sudden Unexplained Death Outreach Policy

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.

Due to the urgency of this these situations, we have enacted an outreach policy to support the many variables in navigating the process of determining the cause of a sudden unexpected death.

1. 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.

 

2. 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.
• Upon request: we contact various organizations and individuals upon the family’s request or as it seems fit based on each individual case. 

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 to Amy Dorsey at Amy@sads.orgThis e-mail address is being protected from spam bots, you need JavaScript enabled to view it or call 1-800-STOP-SAD.

Remember…
If the autopsy findings are normal or inconclusive:
i.e., a “mild myocarditis” or a “slight cardiomyopathy”

1. 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.
2. Do not treat samples with formalin.
3. 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.

The SADS Foundation can help families with other questions, including:

• Physician Referral. SADS can provide a list of knowledgeable physicians across the country.
• Insurance Issues. SADS can provide sample letters and strategies to deal with insurance issues including denials and appeals.
• Identifying Extended Family Members at Risk. SADS can assist in mapping out family pedigrees to identify family members who might be at risk from heart arrhythmias and need testing.
• Support and Networking. SADS can put families in contact with other individuals and families who have had similar experiences. SADS can also put families in contact with established local support networks or help start one in their area. SADS now has an all-new youth support network, SADSConnect.