What is a clinical trial? How does this process work? What resources and information are available to me, based on my location? How can I get involved in the process? As we march toward the world’s first clinical trial for KIF1A-Associated Neurological Disorder (KAND), these important questions are on our minds.

It is absolutely critical for the patient and family community to be informed and engaged in every stage of KAND research and therapeutic development. Below are basic clinical trial resources from trusted and authoritative sources that answer commonly asked questions and explain the clinical trial process and terms. Additionally, there are country-specific resources that delve into different regulatory agencies and approval processes.


We may not have answers to some specific questions. For example: Who will be eligible? Will I have to travel to participate in a trial? When will we see the first clinical trial for KAND? If you have any questions, send an email to impact@kif1a.org, and we’ll do our best to provide you with information and resources to prepare the KAND community for the first (of many) clinical trials.

Country-Specific Resources