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Key Information and Facilitating Understanding in Informed Consent Guidance for Sponsors, Investigators, and Institutional Review Boards

DraftCenter for Drug Evaluation and Research Office of the Commissioner,Office of Clinical Policy and Programs03/01/2024

Description

This draft guidance provides recommendations related to two provisions of the revised Federal Policy for the Protection of Human Subjects (the revised Common Rule) by the U.S. Department of Health and Human Services (HHS) and identical provisions in FDA’s proposed rule “Protection of Human Subjects and Institutional Review Boards.” The FDA’s proposed rule, if finalized, would harmonize certain sections of FDA’s regulations on human subject protections and institutional review boards (IRBs), to the extent practicable and consistent with other statutory provisions, with the revised Common Rule, in accordance with the 21st Century Cures Act. The guidance addresses the provisions of the revised Common Rule that require informed consent to begin with key information about the research and to present information in a way that facilitates understanding and identical provisions in FDA’s proposed rule.

Scope & Applicability

Product Classes

3
Medical products

clinical investigations of drugs, devices, and biologics

Gene Therapy

A type of ATMP involving recombinant nucleic acids or viral vectors.

Investigational Medical Product

Products being studied in clinical research

Stakeholders

9
Sponsors

Assist sponsors in the nonclinical evaluation

Sponsor

Entity responsible for submitting applications under section 524B

Institutional Review Board

Governs top dose in clinical studies

Investigators

Guidance for Sponsors, Investigators, and Institutional Review Boards

Institutional Review Boards

Bodies responsible for evaluating trial risks and benefits for pregnant participants.; IRBs experienced in this population may advise on compensation.

Legally authorized representatives

conveyed to subjects or their legally authorized representatives

investigator

facilitate discussions between a prospective subject and an investigator; Responsible for conducting research and providing informed consent

legally authorized representative

Person authorized to provide consent on behalf of the patient if needed.

patient advocacy groups

consulting in advance with patient advocacy groups; Entities that may review consent forms to ensure they facilitate understanding

Regulatory Context

Attributes

2
minimal risk

studies, such as those involving no more than minimal risk

English Proficiency

Characteristic of the subject population to consider for consent clarity

Identified Hazards

Hazards

3
Reasonably foreseeable risks

The discussion of risks and discomforts is generally among one of the most important elements

Research-Related Injuries

Injuries occurring as a result of participation in research

Unknown Risks

Possibility of unknown risks in investigational medical products

Related CFR Sections (7)

Related Warning Letters (10)

  • In Vivo Bioavailability-Bioequivalence Studies – Clinical

    Maria A. Carballosa, M.D.

    2025-12-23
  • Unapproved New Drug/Unlicensed Biological Product/Biologics License Application (BLA)

    Celularity, Inc

    2025-12-09
  • Sponsor/Investigator

    Verdure Sciences, Inc.

    2025-11-18
  • Clinical Investigator (Sponsor)

    Pamela K. Den Besten, DDS, MS

    2025-09-30
  • Clinical Investigator/Sponsor

    Ralph A. DeFronzo, M.D.

    2025-09-23
  • Clinical Investigator

    Shirish M. Gadgeel, M.D.

    2025-09-09
  • Clinical Investigator

    Mark J. Savant, M.D

    2025-07-15
  • Clinical Investigator

    Peter Michael, M.D.

    2025-07-01
  • Clinical Investigator (Sponsor)

    American Behavioral Research Institute, LLC

    2025-06-10
  • Bioresearch Monitoring Program

    Amy Lightner, MD

    2025-06-03

See Also (8)