UC Davis Health Clinical Studies

A Study to Improve Treatment and Quality of Life in Patients With Duchenne Muscular Dystrophy

Learning more about DMD to improve clinical management

This is an expansion of the original Duchenne Natural History Study (DNHS). It was the largest long-term assessment of people with Duchenne muscular dystrophy (DMD). The original DNHS data is being used to learn more about physical and genetic differences in different people with DMD. It aims to help develop new treatment, better clinical management practices, and new measurements tools for physicians and scientists. This new study will collect information about people’s physical abilities across all ages. It will look at the medical problems they experience and how they use healthcare services. We are interested in how people with DMD and their families interact with their communities and how DMD affects their quality of life. This larger group of people with DMD will provide the opportunity to assess outcomes at each stage of DMD progression. We are also looking for an association between genes (which contain instructions for how your body works) and how they relate to muscle strength and size and how these genes affect possible therapies.

Observational Study
Male, age 2 to 30 years old

Learning more about adults with significant spinal deformity

Examining the natural history of adults with spinal deformity

You are being asked to take part in this study because you have scoliosis (spinal deformity) which is a lateral or side-to-side curvature of the spine. Idiopathic scoliosis has been studied extensively in adolescents. The natural history of scoliosis in adults is less well documented. The purpose of this study is: - to learn more about the natural history of adults with significant spinal deformity. - to examine both the incidence of symptoms and the effectiveness of non-operative and operative treatment interventions. - to determine whether adult deformity does progress with aging, resulting in pain and disability.

Observational Study
Any, age 18 and older

Long-term Study in US Cystic Fibrosis Patients Receiving Digestive Enzyme Supplements to Assess Narrowing of the Large Intestin...

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This is a long-term study in cystic fibrosis patients who are participating in the Cystic Fibrosis Patient Registry to assess the occurrence and risk factors for a rare bowel disorder called fibrosing colonopathy (narrowing of the large intestine). Patients will be followed at their regular clinical care visits over a 10-year period and approached if they develop symptoms of fibrosing colonopathy for collection and use of further detailed information.

Biological study
Any, age all ages
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