Create Your Registry Plan

Consider Constraints

When first building your registry, start with volunteers and free or low-cost methods for collecting information. At this early stage, your registry is similar to a contact list or member database. If your patient advocacy group has more financial resources, consider the option of setting a higher budget to cover more sophisticated data collection methods or staff. Over time, you will build your registry to include medical information, at which point most patient advocacy groups pay for a service, or link with a research center or vendor to operate their registry.

Knowledge, Skills, and Time
You may need additional skills or experience to collect contact and demographic (e.g., age, race, ethnicity, sex) information. Many patient groups spent a few hours a week getting their registry up and running. Consider how much time you have available and look for one or more partners to join you if your time is limited. Consider the importance of obtaining Institutional Review Board (IRB) approval before collecting participant information. Without prior IRB approval, researchers may not be able to use your registry’s data to publish the results of their study.


Consider Constraints
Video: Institutional Review Boards (IRBs) U.S. Department of Health and Human Services (HHS) (link)