Creation of a Registry: Workflows for Design and User Modes


There are two basic modes in which RDRF is intended to be used: Design mode (for creating new registries) and User Mode (for adding/editing and viewing patient data in a registry that has been created).

Only administrators can add new registries, forms, sections or data elements.

Important Point: Once data elements and sections are created they can be used by more than one registry. But altering a data element or section that is in use will immediately affect any registries which use it.

Additionally, a public interface is provided when a registry form is nominated to be a questionnaire. See questionnaires.


Each workflow in RDRF is intended to be performed by a user with a distinct role.


  • Can do anything
  • Create and modify registry definitions
  • Import and Export registries
  • Manage user permissions


Manage membership of patients in working groups within a registry


Enter and view data on patients in a working group within a registry

Design Mode Workflow


  1. Do this first on pen and paper!
  2. Gather requirements of the data fields ( “DEs” ) required
  3. For each data field required, decide its datatype. If a field is logically a range, work out the allowed permitted values. Depending on the datatype, decide any validation rules for a numeric or float data type (max and/or min), and for a string data type, the maximum length or pattern. Decide if any Derived Data Elements (calculated data type) are required.
  4. Split them into logical groups (sections). Decide whether a section might be multiple
  5. Portion related sections into forms
  6. If a questionnaire is required for the registry, nominate a single form as a questionnaire

Creating a Registry

Assuming all Data Elements (DEs) have already been created

  1. Admin logs in and navigates to “Registries” from “Settings”
  2. Admin clicks on green “Add” button
  3. Admin fills in Name, code and description of registry (code must be unique and not contain spaces)
  4. Admin pastes a html splash screen into the Splash screen field (this will be linked to on the main page)
  5. Admin navigates to “Registry Forms” from “Settings” and for each desired form in the registry, clicks the green “Add” button.
  6. Admin Selects the registry just created from the drop down list
  7. Admin enters a name into the name field (this name will appear on the form, eg “Physical Info”)
  8. Admin enters a comma-separated list of form section codes (E.g. “FHPhysicalSection,FHPersonalitySection,FHAmbulatorySection” (Note: The codes should be unique and have no spaces - no quotes! - prefixing with registry code is conventional but advised). If the form is intended to be a public questionnaire form, check the questionnaire checkbox
  9. Save the form definition
  10. For each section referred to in the comma separated list, add a section object by navigating to “Sections” from “Settings”
  11. Click the green “Add” button and enter the section code (used in the form definition)
  12. Enter a display name for the section (this will appear on the form above the fields defined for the section)
  13. Enter the DE codes of any fields required in the elements list (as a comma-separated list) E.g. “CDEName,CDEAge,CDEHeight” (Note- The system will check whether any entered DE codes exist when the section object is saved - if any DE code cannot be found in the system, the section object will not be created)

User Mode Workflows

Adding a user (curator or clinician, or genetic staff)

  1. Admin logs in
  2. Clicks on “Users” from the “Menu” button
  3. Clicks Add User button on right
  4. Enters Username and password
  5. Clicks Next
  6. Enters personal information
  7. Checks “Staff Status”
  8. Control-Clicks Working Group Curators for curator (or Clinical Staff for clinician, or Genetic Staff for genetic staff)
  9. Control-clicks the required working groups and registries (if more than one)
  10. Clicks save

Adding a Patient to a Registry

  1. Curator or clinician logs in
  2. Click “Add Patient” (or click on the Patients name to edit patient)
  3. Control-click on each registry that is listed that you would like the patient to be a member of (NB. If a clinician or curator has access to only one registry, it will already be assigned)

Entering (and viewing existing) Demographic Data for a Patient

  1. Login as a clinician
  2. Click the Patient’s name in the Patient column of the Patient List
  3. Edit contact details for the patient
  4. Click Save button

Changing Working Group for a Patient

  1. Login as curator
  2. Click the Patient’s name in the Patient column of the Patient List
  3. Select required working group (NB. workings group in the dropdown will only be those for which the curator has access)

Entering / editing existing Clinical Data for a Patient

  1. Login in as a clinician
  2. If clinician has access to more than one registry a drop down of registries is shown in the search area, otherwise no registry dropdown will appear and all operations will occur in the one registry
  3. Click the “Show Modules” button in the patients list for the required patient - a pop up of available forms will appear (except if there is only one defined clinical data form)
  4. Click the desired clinical data entry form
  5. The screen will show the required form
  6. Edit and click Save

Approving/Rejecting a Questionnaire response

  1. Curator or clinician logs in.

  2. Click “Questionnaire Responses” under “Menu”

  3. Click “Review” under “Process Questionnaire” to approve/reject a questionanaire

  4. User reviews information in the submitted form and clicks approve (or reject)
    • If approve is clicked, a new patient will be created in the registry and working group indicated in the form
    • If reject is clicked, no patient record will be created

Adding a new working group

  1. Admin logs in
  2. Click on “Working Groups” under the “Menu” button
  3. Click the green “Add” button
  4. Enter name and save

Changing the Working Groups of a Curator

  1. As an admin, click on “Users” under the “Menu” button
  2. Click on the username of the curator required
  3. Control-click (command-click for Mac) on each working group in the combo box required for that user (a curator in 2 working groups will see patients in both groups)
  4. Click the Save button

Assigning a curator (or clinician) to a registry

  1. As an admin, login and then click on “Users” under the “Menu” button
  2. Click on the username of the user required
  3. Control-click (command-click for Mac) on each registry the user is meant to have access to
  4. Click the Save button

Adding Genes

  1. Admin logs in
  2. Click on “Genes” under the “Menu” button
  3. Click on “Add” and add details
  4. Click Save

Adding Laboratory

  1. Admin logs in
  2. Click on “Laboratories” under “Menu”
  3. Click on “Add” and add details
  4. Click Save