Your family can advance KAND research from the comfort of your own home by participating in the KAND Natural History Study. This study is crucial to advance our understanding of KIF1A Associated Neurological Disorder (KAND) and swiftly develop strategies for treatment.
Our partner, Chung Lab at Boston Children’s Hospital, launched the KIF1A Natural History Study in 2017 with support from KIF1A.ORG. As of December 2023, there are over 175 families from around the world enrolled in the study, which continues to grow as more individuals with KIF1A-related disorders are identified through genetic testing.
What Is a Natural History Study?
A Natural History Study follows a group of patients over time to collect information about their symptoms and better understand the disease. The KAND Natural History Study gathers comprehensive information from participating patients on an annual basis to track changes or progression of the disease in a longitudinal manner. This robust study allows the scientific and medical community to compare cases, discover new phenotypes (symptoms), and re-contact families as new discoveries are made.
By collecting comprehensive medical data from each individual diagnosed with KAND, we can develop better care guidelines and evaluate the effectiveness of potential KAND therapeutics in clinical trials.
KAND Natural History Study Team
Families affected by KAND are also a core member of our research team! Your participation in this study directly advances KIF1A research. Without your participation we will not discover treatment. Completely managed by Chung Lab staff, the KAND Natural History Study complies with strict ethical and privacy protection standards mandated by the Institutional Review Board. Email ASCENDstudy@childrens.harvard.edu today to connect with the KAND Natural History Study team at Boston Children’s Hospital!
Dr Chung describes the ASCEND study in the first part of this community call. Watch minutes 0-19 for detailed information on ASCEND.
Enroll in the Study
Participating in the study is done from the comfort of your own home by completing interviews and surveys online. 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. Please review the document below for more instructions.
If you have any troubles with accessing the form, send an email to ASCENDstudy@childrens.harvard.edu or impact@kif1a.org
By participating in this study you are immediately joining the fight to discover treatment and a cure.