In this step you will review whether you have met your goals, make adjustments based on that assessment, and begin to plan for the next phase of your registry. This iterative evaluation of your progress will help you to improve the effectiveness and relevance of your registry and provide another opportunity to engage with your stakeholders.

In this step you will let researchers know your registry exists—if they don’t know about it, they won’t use it. Continue to prioritize data stewardship and your registry participants’ privacy by entering into data use agreements with registry end users that establish permitted uses of the data.

In this step you will check the data you have collected for any errors and identify any broader problems with the data collection process. You should also review your data security protocols to ensure protection of participants’ information.

In this step you will develop a strategy for for how you will find patients and a plan that outlines how you will communicate with them once they join. You want to establish a high level of trust and ensure their continued participation.

In this step you will create a form patients will fill out to join your registry and that keeps their information private and secure. Options vary in cost and features, so refer to your registry goals to inform the data collection method you choose. Once you create an online form, you will want to test it with colleagues or other patients to ensure the form is focused and the questions are clear.

In this step you will decide which questions to include in your registry and how the answers will be formatted. Data are most useful if they have been collected in a standardized way (that is, everyone is asked the same questions and answers are provided in the same format). Choose an established data standard for collecting patient information for your registry.

In this step you will establish criteria to help you determine who will be eligible to join your registry. Depending on your registry’s goals, you may want to recruit broadly or have a narrower focus. Your decisions will affect the cost and complexity of your registry, so keep in mind your short- and long-term goals.

Planning ahead helps establish clear goals for your registry and a strategy for collecting quality data. In this step you will also define limitations and establish milestones to track your success.