Many EHRs are based on older technology, and as the government demands more functionality, they will struggle to meet requirements, such as getting data out.

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Ms. Siedman says such a time lag in getting the data out might result in a situation where there are still multiple natural-history studies in Sanfilippo syndrome.

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They prevent malware from getting into a network, and they prevent sensitive data from getting out.

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While it rarely prevents the FTC from getting the data or sorting out the issues, the process can take longer than the eight months it took the FTC to review and approve this deal.

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And the data out over the last few weeks tells us it is getting better.

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Getting scientists (or any group of competitive human beings) to exchange data turns out to be a real problem especially in the highly-regulated environment in which clinical data sit.

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Figure out how to make things simpler easier, ie: getting all the medical records and testing data in one, secure place.

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