Review & Evolve Your Registry

Revisit Registry Goals

Periodically evaluating your registry goals helps you verify that you’re achieving what you committed to―with both your registry participants and researchers. When you set up your registry, you developed a set of measurable metrics to help you monitor and evaluate the registry’s success and help you determine whether you’re accomplishing your goals. If you have not determined the components of your monitoring and evaluation approach, including developing a set of metrics, do this now.

Measure Your Success

The following questions can help you evaluate your progress in meeting your goals. Each question is followed by a sample goal and an associated metric that could help you monitor whether you are achieving the goal.

  • How many participants have joined the registry?
    • Sample goal: meet recruitment target
    • Sample metric: total number of participants
  • What is the quality of the data you have collected?
    • Sample goal: complete data set
    • Sample metric: number of fully completed registrations
  • Are participants updating their data?
    • Sample goal: high retention and active participation
    • Sample metric: number of times participants visit/update their data
  • Is your data being used?
    • Sample goal: data used for research studies
    • Sample metric: number of inquiries from researchers and number of studies in which data were used

Identify Problems and Solutions

If you are not meeting your goals, ask yourself:

  • What is working well? What isn’t?
  • What are the challenges in meeting the registry’s goals? Examples might include:
    • Not finding researchers to use the data
    • Not able to recruit participants
    • Participants not keeping their information up to date
  • What are possible solutions to these challenges?
    • Are there easy fixes or do they require longer-term implementation?
    • What resources do you need to accomplish these solutions?
    • Are these solutions feasible given your current resources?
      • If yes, revisit your timeline/calendar of events and registry plan.
      • If not, what are some ideas for how you can obtain the resources you need?

Depending on your answers to these questions, you might want to revise your goals and metrics to assess your registry’s success.