What is sepsis?
Who gets sepsis?
Where can I find more information about sepsis?
What is SIC?
What is the role of Sepsis Alliance in SIC?
I do not represent an organization or company, can I still join SIC?
What is the distinction between a voting and non-voting member?
Can I invite guests to SIC events?
How much does it cost to join SIC?
How are annual dues calculated?
What is IMSCC?
How do I get involved?
What is SDC?
What is a patient data trust? How is it different than a disease registry?
Registries are one-directional: data go into them, but only come out for a select few. There is little emphasis on the collaborative and contributory role of patients and other members of the public. Data trusts emphasize data as a public good, and so they are bi-directional: privacy-protected data go in and, for anyone invested in better understanding a condition like sepsis, can be accessed.
Data trusts are also explicit about governance and how data are managed. Trusts, unlike registries, often have structured frameworks for oversight of data’s use and privacy, which creates transparency that is in the public interest.
Will trusts require more paperwork by doctors and nurses?
Don't we already track the quality of care delivered to sepsis patients?
Who would run a sepsis data trust?
How soon will we have a national sepsis data trust?
I still have questions, who do I contact?
Please contact Thomas Heymann at email@example.com with any additional questions.