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I wonder if there's also not a big effort to ask the parents if they want an autopsy, or if many simply refuse? It's an emotional situation and there might just be a big lack of data here (plus you need a lot of working hypothesizes on what to be looking for as well).

There is a huge lack of data, and huge unwillingness to keep track of it. My wife and I are both math majors, and our immediate reaction to any of this stuff is to keep data. We would love to submit our experiences (which we've kept detailed records of) to some kind of database so that researchers can formulate hypotheses, but no one wants it.

Sorry for your loss. There must be web fora of parents who suffered the same, might that be a starting point to establish an independent data repo?

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