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Now Recruiting COL6 and LAMA2 Patients Ages 0-5 for Clinical Trial Readiness Studies!

Clinical trial readiness relies on establishing natural history and identifying outcome measures. In the COL6-related dystrophies (COL6-RDS) and the LAMA2-related dystrophies (LAMA2-RDs), natural history and outcome measures are well-defined in children 5 years of age and older.  The NNDCS is thus focused on collecting natural history and outcome measures data in children with COL6-RD and children with LAMA2-RD from infancy through age 5 years.   

Study visits consists of gathering clinical history, performing a neuromuscular examination, performing a muscle ultrasound and performing neuromuscular motor scale assessments.  The collection of blood and urine samples for biomarker research can be performed (but is not mandatory) as part of study visits.

Participation in a natural history and outcome measures study will help to contribute to clinical trial readiness for COL6-RDs and LAMA2-RDs; however, participation is not a requirement for enrolling in future clinical trials for COL6-related dystrophies or LAMA2-related dystrophies. 

For further information, please contact the NNDCS Clinical Coordinator:  

Christopher Mendoza: