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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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