Clinical data sharing

Agios is committed to responsible and transparent external sharing of clinical trial data to promote scientific and medical advancement.

Agios complies with all applicable regulatory requirements regarding clinical trial disclosure.

Agios posts results directly to clinical trial registries and registering all Agios-sponsored clinical trials and interventional trials conducted in patients (Phases 1-4) on and

Agios protects confidential patient information and Agios-specific sensitive information in order to ensure patient privacy and the protection of proprietary information.

Data sharing with researchers

Agios is committed to sharing clinical trial data with scientific researchers in the interest of advancing public health. Agios will consider external requests from qualified researchers for data derived from completed Agios-sponsored interventional clinical trials conducted in patients for products and indications submitted to and approved in both the United States and the European Union.

Agios will not review external requests for data derived from clinical trials that are not yet completed or are not sponsored by Agios such as investigator-sponsored trials. Researchers may request data by downloading and completing a request form and emailing it to

Download Data Sharing Request Form

Each request will be reviewed and evaluated by Agios based on:

  • Data requested
  • Rationale for the proposed research
  • Statistical analysis plan
  • Publication and posting plan
  • Qualifications and experience of requestor or intended researcher(s) and any potential conflicts of interests
  • Source of any research funding

The qualified researcher(s) are then responsible for obtaining any required approvals for conducting the research (for example, from ethics committees, institutional review boards, relevant research institutions or funding bodies).

If Agios agrees to the release of clinical trial data for research purposes, the requestor will be required to sign a data sharing agreement prior to the release of any data. Agios will then provide access to the agreed upon data sets and documents such as the clinical study report synopsis, protocol and statistical analysis plan.

For healthcare providers

We recognize and appreciate the significant role that physicians play in the lives of people with rare diseases. They are a cornerstone of the community that treats and supports patients.

With medical information, grant opportunities, educational resources and treatment options, we aim to further their efforts on behalf of patients.

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Our unique understanding of cellular metabolism is foundational to our success and the connective thread that binds our people and our pipeline together.