2026-19849NoticeWallet

FDA Asks for Input on Human Research Data Collection

Published Date: 9/29/2026

Notice

Summary

The FDA wants your thoughts on how they collect info about medical devices to keep people safe. This affects anyone involved in medical research or device tracking and aims to improve how data is gathered without adding extra hassle. You’ve got until November 30, 2026, to share your comments, so don’t miss out on shaping the future of health safety!

Analyzed Economic Effects

3 provisions identified: 2 benefits, 1 costs, 0 mixed.

Written Informed Consent Required for FDA Studies

For clinical investigations regulated by FDA, investigators must obtain legally effective informed consent and document it using a written consent form that is IRB-approved and signed and dated by the subject or the subject's legally authorized representative. The basic elements required in consent are set out in 21 CFR 50.25 and include purpose, procedures, risks and benefits, confidentiality, contact information, and a statement that participation is voluntary.

Large Time Burden on IRBs and Investigators

The FDA estimates about 2,520 IRBs oversee FDA-regulated research and quantifies annual administrative burden: 1,363 hours for reporting tasks, 1,522,104 hours for recordkeeping tasks, and 103,336 hours for third-party disclosures. FDA assumes each IRB meets about 14.6 times per year and uses 40 person-hours per meeting for recordkeeping under Sec. 56.115.

Certificates of Confidentiality Protect Research Privacy

The 21st Century Cures Act requires issuance of Certificates of Confidentiality (CoCs) for federally-funded human subject research that collects or uses identifiable, sensitive information (mandatory CoCs), while CoCs remain discretionary for non-federally funded research. FDA issued guidance on CoCs (November 2020) describing how to request them and the responsibilities they carry.

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Key Dates

Published Date
Comments Due
9/29/2026
11/30/2026

Department and Agencies

Department
Independent Agency
Agency
Health and Human Services Department
Food and Drug Administration
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