How
to access AFC data.

Before you Start

Study Aims: Know what your study questions are and what type of data you’ll need to answer them. You should have an Aims page comparable to what you would have for a grant. PHS does not approve overly broad protocols. The aims must be specific and have reasonable boundaries. Any changes to linkages, files, years or aims will need PHS and ABFM approval. Be thorough.
All proposed linkages, even to public data by zip code, must be disclosed in advance.
Study Team: You must have a PI eligible individual listed as the study PI. Exceptions may be granted but must complete the PI exemption process before application. You can find more information about that here: PI Eligibility Waiver. Individuals from collaborating institutions will also have to complete a third party agreement with an institutional signatory. Start this process early.
External (non-Stanford) researchers must complete a Third Party Agreement. You should identify who these people are and include their names and affiliations in the initial application.
ABFM Approval: You will need an approval from ABFM to do a research project with AFC. The form can be found here: Restricted Data Application Form

Applying for the AFC data

The American Family Cohort (AFC) data are very rich and classified as PHI. Consequently, there are a number of regulatory and security steps to gaining access. These steps are managed on the PHS Data Portal.

1. Go to http://phsdata.stanford.edu/
2. Register using your institutional email address
   1. Select your institution from the list of options
   2. Authenticate
3. Search for: AFC OMOP DID dataset
4. Click “Apply for Access”
5. Complete each step as instructed in the requirements

Third Party Data Use Agreement (TPA)

If you are a non-Stanford researcher seeking to access the American Family Cohort dataset, your organization will have to sign a Third Party Data Use Agreement with Stanford. The type of agreement will depend on whether you are have Stanford collaborator or not.

1. Each TPA is project specific. Stanford will need:
   1. A statement of work from your organization
      1. Statement of Work for AFC Data Users with a Stanford Collaborator
      2. Statement of Work for AFC Data Users without a Stanford Collaborator
   2. Project IRB Approval from the external user’s institution
   3. Stanford Project Intake Form.
2. Once these are done, email these items to Isabella Chu at [email protected]. the Stanford Contract Officer will draft a Third Party Data Use Agreement (TPA) for your project and organization.

Costs to Use AFC Data

AFC Research Consortium is a non-profit and we are supported by grant funding. ABFM supports the ABFM PRIME Registry at a financial loss. All charges are steeply discounted from what is necessary to fully support these data.

1. For external collaborators: There is a $5,000 administrative review fee for using AFC data.
2. For funded projects:
   1. Data use is the lesser of 10% of the direct costs of the grant per year or $10,000 payable to ABFM to help support the ongoing registry which makes the data possible.
   2. If you are collaborating with Stanford, we will request salary support for an analyst at minimum 15 – 25% for data management and 50% minimum if you require analytic work.

Links to Instructions on PHS Data Portal and Tools

• You can find detailed instructions on how to complete data access requirements here: PHS Data Access
• Questions can also be posted to our PHS Data Users Slack channel
• If you need further help you can sign up for office hours at phsofficehours.stanford.edu. Please select Access and Admin.
• Instructions on using the PHS Data Portal tools and Jupyter Notebooks can be found here: docs.redivis.com

Contact Information

For help applying for access, you can schedule an office hour at phsofficehours.stanford.edu. Select access and applications.

You can also email Isabella Chu

For questions about the data you can contact Ayin Vala or Shiying Hao.