The Russian COL-6 register was created in January 2024 by Russian COL-6 patient community . On the day of its creation, it included 74 patients with COL-6.
The purpose of creating the register is to raise awareness about COL-6 in the world and advocate for Russian patients and their families.
To date, the registry includes 166 genetically confirmed COL-6 patients. In 1 year of operation, the number of patients increased by 92 new patients.
There are 130 COL-6 children and 36 COL-6 adults in the register.
The register is replenished thanks to the active work of the community and interaction with leading Russian neuromuscular doctors.
The data presented will include an analysis of the following parameters: age, gender, genotype, mobility, respiratory function status, and data on population segregation.