Participate in Research

KCNQ2 Research In Action

Your Voice, Your Impact

Families hold the key to move research forward!

Before new treatments can be tested, researchers work behind the scenes in labs and models. This early phase helps scientists understand how the KCNQ2 gene affects brain cells, develop models (e.g., in cells or animals), and test ideas for what might help. Families may be invited to contribute by sharing medical histories, providing blood or tissue samples, or joining registries.

Your first step in participating in research and studies should be to create a CRID identifier (Clinical Research ID). Think of the CRID as your passport in the research world. It allows your data to “travel” safely between studies, hospitals, and scientists, enabling collaboration while protecting your identity. Patients can share their CRID identifier with investigators on research studies that support the CRID they are participating in. By sharing your CRID (KCNQ2 Research ID), researchers can then reuse, merge, and share your research data without using your personal identifiable information. This helps create a dataset for an individual vs. a variant. For more information, you can read this recent publication.

To create your CRID today, visit https://thecrid.org. You can watch the video below to see how quick it really is. It takes 2 minutes!

Introduction to the Clinical Research ID