We announced the launch of the Collagen VI Deficiency Myopathy Registry (COL-VI Registry), created with the aim of registering the largest number of patients with this disease to be able to carry out a 5-year natural history study, in paediatric and adult patients and to assist in the localization of patients for clinical trials.
The design of this registry has been agreed by national experts, both clinical and basic in this pathology, led by Dr. Cecilia Jiménez and Dr. Andrés Nascimento of the Hospital de Sant Joan de Déu. This register is part of the project NMD-ES (Spanish Registry of Neuromuscular Diseases) of CIBERER, which is coordinated from the Unit of Neuromuscular Diseases of the Hospital of Sant Pau by Dr. Isabel Illa. Currently neurologists from 28 hospitals are participating in the NMD-ES project.
We invite you all to participate in this new project and we encourage you to introduce the data of your patients.
COMO PARTICIPAR EN EL REGISTRO
Contacto Registro Miopatía por déficit de colágeno VI (Pacientes)
Contacto Registro Miopatía por déficit de colágeno VI (Médicos)