The Natural History Study is crucial to advance understanding of KIF1A Associated Neurological Disorder (KAND) and the progression of the disease. This study is vital to understanding KAND and swiftly developing strategies for treatment.

Our partner, Chung Lab at Columbia University Medical Center, launched the KIF1A Natural History Study in 2017. As of April 2019, there are approximately 100 families from over 16 countries enrolled in the study, which continues to grow as more individuals with KIF1A-related disorders are identified through genetic testing. It is essential for every KAND family to participate in this study.

A Patient Registry

The Natural History Study is building a registry of patients with confirmed KAND diagnosis. This robust directory of families affected by mutations in KIF1A allows the scientific community to compare cases, discover new phenotypes and re-contact families as new discoveries are made. The Natural History Study on KAND is a systematic collection and analysis of comprehensive, longitudinal data collected from families diagnosed with KAND.

The goal is to compile comprehensive medical data from each individual and expand the study over time, allowing researchers to compare pre- and post-treatment results on an individual basis.

Enroll in the Study

Families affected by KAND are a core member of our research team. Your participation in this study directly advances KIF1A research. Without your participation we will not discover treatment. The process is easy: phone interview with a member of Chung Lab and sending all medical records. There is no cost to enroll and the study is open to all languages, so families don’t need to speak English in order to play an active role in discovering treatment.

If you have received a clinical or genetic diagnosis, please contact Lia Boyle at Columbia University Medical Center at lb2905@cumc.columbia.edu to get started. If you do not receive an email from Lia within a week, your email may be flagged as spam/junk. Send an email to impact@kif1a.org and we can help make the connection.

By participating in this study you are immediately joining the fight to discover treatment and a cure.