Learn About Ethical and Legal Aspects
As soon as you decide to create a registry, become familiar with the ethical and legal responsibilities of running a registry. If you don’t follow the laws and rules from the beginning of your registry, your registry might not be usable for research or, ultimately, the treatment-approval process.
Make sure that your registry follows local, state, and federal laws and rules that cover the collection of personal and health information. In some cases, you need to follow international laws and rules as well. Which rules and regulations your registry needs to follow depends on the type of information the registry collects, how the registry will be used, and who gives and uses the information.
It might be a good idea to talk to a lawyer or ethics expert. These experts can help make sure that your registry follows the relevant laws and rules.