As part of the registry creation process, you need to set your registry's default data sharing, privacy, and access settings. This is not only the first option participants receive upon creating their account, but also the primary option chosen by registry participants.

Creating and Adding Privacy Directives

Before you enter your organization's recommended default settings, you must first create the privacy directives that you want to list in your registry's data sharing, access, and privacy settings. By default, all sponsors are required to list the following:

  • Your organization
  • Researchers recommended by your organization
  • Researchers addressing your condition
  • All researchers
  • Genetic Alliance Translational Science Network
  • DiseaseInfoSearch.org listed organizations serving your condition
  • Researchers recommended by DiseaseInfoSearch.org listed organizations serving your condition
  • PCORnet: Patient Centered Outcomes Research Network
  • Newly-released data analysis platforms
  • Newly found privacy directives

For a list of descriptions for each directive listed above, please go to Privacy Directive Descriptions. All default directives are ready to use and have already been added in your portal. You may elect to remove any of the default privacy directives.

In addition to these default directives, think of other directives you may want to include i.e. partners. To add these directives, you must create and add them as privacy directives.

Creating Privacy Directives

To create a new privacy directive:

1. Navigate to "PEER/PA Admins" on the left hand menu in PEER for Research.

2. Click "Add Org" to add your privacy directive. At a minimum, you must add the name, email, URL, and description.

3. Click "Save" once complete.

4. Repeat this for all the directives you'd like to add.

Adding and Removing Privacy Directives

Next, you need to add your directives into your organization's default data sharing, access, and privacy settings. To do so:

1. Go to your portal menu < portal name < Settings < General Settings

2. Add your newly added directive in the "Other privacy directives" column. As you start typing the name of your directive, a drop-down list should automatically appear.

If you would like to remove any privacy directives, simply select the "x" button to remove them.

Updating Privacy Directives

If you created privacy directives, you can update their descriptions, names, etc at any time by:

1. Navigating to "PEER/PA Admins" on the left hand menu in PEER for Research.

2. Click "Update Org". In the "search organization" field, start typing in the name of the directive you'd like to update. A drop-down menu should automatically appear as you start typing. If the directive does not appear in the search, it means that the directive doesn't exist.

3. Click "Save" once complete.

Setting Your Organization's Default Privacy Settings

To begin setting the default privacy settings:

1. Navigate to your portal menu < portal name < Update Organization Information

2. Click on the second grey tab that says "Org's Default Privacy Settings." Here, you should see a list of all your privacy directives. If you do not see a directive there, please check your "General Settings" to make sure they are listed there.

3. Begin selecting recommended settings for your participants, for each of the privacy directives on the left hand side. Once you are done, click "Save" at the top right corner.

4. Navigate to the third grey tab that says "Org's Researcher Details" to enter in a description for researchers recommended by your organization. We recommend you list this privacy directive even if you do not yet have any partnerships with researchers; it is much easier to ask participants to set these settings when they first create an account rather than later. In the description box on the bottom right, you can either describe your scientific/medical advisors or researchers, or if you do not yet have researcher partnerships, you can list your registry goals and let participants know that there are no active researchers at this time, but that you would like to inform them in the future.

5. Be sure to click "Save" again to save your changes!

6. Preview what your settings look like. Navigate to your portal menu < portal name < View portal < demo portal and create a demo account to view the default privacy settings. Participants can also view descriptions for each privacy directive by clicking on the information button (denoted by the blue circle with a white ā€˜iā€™).

Checkpoint: Do you want to make the privacy settings a requirement? You can require participants to set their privacy settings before taking any of your surveys. This is a great way to ensure that your participants understand how data sharing and ownership works in PEER. You can do this from the drop-down menu that appears on the right-hand side in the PEER Survey Toolkit.


Next, check out our section on Community Guides, which is another way for registry sponsors to assist participants in setting their privacy settings, and make the settings more personal and applicable to their participants.

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