Please reach out to the Research Coordinator listed as the contact for studies of interest to determine if they are currently enrolling. 

DMS Bind

Population: Pediatric & Adult

Disease: All Neuromuscular

DMS Bind is described as the banking of DNA, muscle, skin or blood to study inherited neurological diseases.

For more information, contact Research Assistant Emily Woolsey at: emily.woolsey@hsc.utah.edu 

MD STARnet

Population: Adult and Pediatric

Disease: All Neuromuscular

Muscular Dystrophy Surveillance, Tracking and Research Network. 

For more information, contact Research Coordinator Sarah Moldt at: sarah.moldt@hsc.utah.edu

GTAC

Population: Adult

Disease: Amyotrophic Lateral Sclerosis (ALS)

Genomic Translation for Amyotrophic Lateral Sclerosis (ALS) Care. 

For more information, contact Research Coordinator Crystal Neate at: crystal.neate@hsc.utah.edu

COL VI

Population: Adult

Disease: Collagen VI 

Clinical and Molecular Characterization of Collagen VI Myopathies.

For more information, contact Research Coordinator Sarah Moldt at: sarah.moldt@hsc.utah.edu

FSHD ReSolve

Population: Adult

Disease: Facioscapulohumeral Muscular Dystrophy (FSHD)

Clinical Trial Readiness to Solve Barriers to Drug Development in Facioscapulohumeral Muscular Dystrophy. 

For more information, contact Research Coordinator Sarah Moldt at: sarah.moldt@hsc.utah.edu

FSH Wellstone

Population: Adult

Disease: Facioscapulohumeral Muscular Dystrophy (FSHD)

We are interested in following up with Utah families who have a history of FSHD to identify genetic variants that influence the severity of disease. You can take our study survey HERE

For more information, contact Research Coordinator Sarah Moldt at: sarah.moldt@hsc.utah.edu

Avexis 101 Registry

Population: Pediatric

Disease: Spinal Muscular Atrophy (SMA)

A Long Term Registry of Patients with a Diagnosis of Spinal Muscular Atrophy. 

For more information, contact Research Coordinator Sarah Moldt at: sarah.moldt@hsc.utah.edu

Cure SMA Registry

Population: Pediatric

Disease: Spinal Muscular Atrophy (SMA)

A Multicenter Cure SMA Clinical Data Registry.

For more information, contact Research Coordinator Sarah Moldt at: sarah.moldt@hsc.utah.edu

Cognitive Function & Neuroimaging in DM1

Population: Pediatric

Disease: Myotonic Dystrophy (DM)

This study aims to identify differences in brain connectivity in children with congenital myotonic dystrophy (CDM) and childhood-onset myotonic dystrophy (chDM1) compared to controls that can be measured at baseline and one year, as well as demonstrate that clinical outcomes of cognitive function correlate with brain connectivity and network changes.

For more information, contact Research Coordinator Becky Crockett at: bcrockett@genetics.utah.edu