Develop the Right Questions to Ask

Document Permissions to Use Data

Include questions that clarify how you intend to use the information you collect for your registry, who will have access to the data, how the data will be shared and with whom, and decide if any uses will be optional. This will give participants the ability to opt out if they choose. Being clear and transparent will help build trust in your registry and data collection methods, and underscore your role as a data steward. To learn more about obtaining informed consent, you may want to read Global Gene’s Rare Toolkit: Informed Consent – Important for Treatment Decisions and Advancing Research .

If you’ve decided to recruit patients from other countries, it’s important to familiarize yourself with that country’s laws regarding data privacy and security (e.g., European Union (EU) General Data Protection Regulation (GDPR) for European countries).