I wanted to share information re: Autism diagnosis and the potential for a national registry. If you are parents and haven't already I suggest you contact physicians, hospitals, medical researchers, schools, and insurance providers, including Medicaid and the CDDO. Children's Mercy's legal team has been incredibly helpful in guiding us on how to best secure our child's information. Their suggestion, rescind ALL permissions to share any information, have records altered to not list diagnosis unless it's required for care, and limit who is sharing diagnosis beyond that. The CDDO has altered the BASIS report for our child, Medicaid and his Case Manager have removed the diagnosis from the health assessment, as well as the person centered support plan, the school district has removed diagnosis from the IEP plan, etc... I was not the only parent who reached out, and after speaking with our genetics doctor, the Children's Mercy legal team some great guidance to get us started. The CDDO (Johnson County) also went through all documents in our child's case and identified anywhere the diagnosis was listed so the person who owns/ created the document could amend it. It's a process, but we're trying to protect the information anywhere we can. Other options to consider: mobile devices, social media accounts, any groups you may belong to on Meta which are connected to the diagnosis, etc... The only thing we cannot rescind is participation in NIH funded research. That data already exists in NIH files and can't be removed. But by law and research protocol, the blind studies are conducting using no names or other identifying factors for study participants. In theory our child's research ID number has been shared, but since we rescinded consent, the child's name and any samples or data tied to that number have now been deleted/ destroyed. I hope this might be helpful to anyone else trying to navigate options to protect personal health information.
FYI. Shared by a parent that doesn’t want their child to end up in that freak’s data base.
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