How To Create a Registry in Ten Minutes

Modelling

  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

Creation

  1. Login as an admin and navigate to “Registries” via the “Admin Page” link under the Admin User icon in the banner.
  2. Create a registry object (Registries link in the Admin Page) and give it a name and code
  3. Create any permitted value groups required ( adding
any permitted values to the range ( Registry Permissible Value Groups in the Admin Page)
  1. Create DEs (one per data field ) - OR note an existing DE that does the job (IMPORTANT deleting a DE
may affect other registries which use this cde - in the current version there are no safeguards to prevent a used DE from being deleted. Proceed with caution!)
  1. Create the section objects ( Registry Section link in Admin Page) and enter the cde codes required into the elements field
NB. This MUST be a comma-delimited list (E,g “CDEName,CDEAge” - no quote, no spaces.
  1. Create forms and link them to the registry
  2. Add section codes to the sections field

That’s it as far as registry definition goes. The RDRF database now contains the definition of the registry. It is already usable by end users without any re-start - the defined forms are created entirely dynamically.

Registry Use

  • To begin using the registry, login as a curator and assign patients to the registry.
  • Patients can be added by navigating to the “Patient List” from the “Menu” button. Forms are then accessed for each Patient by clicking on “Modules”.

Demo Site

  • A demo site is up and running at: https://rdrf.ccgapps.com.au/demo/
  • Logins Provided (username/password):
    • admin/admin (for definition of new registries)
    • curator/curator (for data entry)
    • clinical/clinical (for data entry on clinical forms)
    • genetic/genetic (for data entry on genetic forms)
  • A Demo Contact Registry and Demo Clinical Registry for Myotonic Dystrophy are provided.