Disability Red Flag: Clinical Trial Records
When filing a disability claim, the most important evidence you can submit is your medical records. You cannot be found disabled if you do not submit proof of your medical conditions and how they impact you. This is true for all disability applications: Social Security, private/employer disability, public retirement systems, and state disability.
Clinical Trial Records Are NOT Medical Records
What is not well known is that clinical trial records cannot be used for any disability claim because they are not accessible. Clinical trial records are different from medical records. They are propriety information that belong to the drug companies, so patients do not have the legal right to obtain them. Clinical trial records are not released from ongoing trials, and they are very rarely released from finished trials.
How Does this Impact Disability Claims?
If you only get clinical trial care for your Huntington’s disease, then you do not have the records necessary for any disability claim. In fact, it will be like you have no medical records at all. If you have no medical record or no medical evidence, you cannot be found disabled.
Unfortunately, this disproportionately impacts the HD community because so many individuals participate in clinical trials.
Can I Participate in Clinical Trials?
Yes! The problem is not participating in clinical trials, the problem is when you ONLY participate in clinical trials. Clinical trials are incredibly important, and families need to continue to participate to further HD research. Learn more about the importance of participating in HD clinical trials and HD TrialFinder.
Clinical Trials and Clinical Care
It is very important to know that IF you participate in clinical trials then you need to get regular clinical care. This means making regular appointments with your neurologist outside of the clinical trial. Generally, the more clinic visits you have the stronger your medical record will be for a disability claim.
It is very important to find the right clinical care team and the right neurologist. You can find information about HDSA’s Center of Excellence Program here, and you can locate your closest HDSA Center of Excellence here.
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If you have questions, you can always Ask Allison!
