Research Studies, 2001-2003 Project title: Discussion forum for a Biological Sciences Genetics and Genomics class Investigator: Erica Pantages, PhD. Harvard University Approval: 11/2003 Study Type: Recruitment Description: The aim of this study is to better understand the demographic and medical characteristics of Registry members diagnosed with Congenital Myotonic Dystrophy. This preliminary study may prepare for and encourage future research in the area of Congenital Myotonic Dystrophy. Project title: Quality of Life in Persons with Disabilities Investigator: Craig McDonald, MD. University of California, Davis Approval: 6/2003 Study Type: Recruitment Description: This project studied the frequency and severity of pain problems that occur in patients with disabilities, especially Myotonic Dystrophy and FSHD. Project title: Position Effect and Vascular Adaptation in FSHD Investigator: Rabi Tawil, MD. University of Rochester Approval: 2/2003 Study Type: Recruitment Description: This project studied the genes affected in FSHD, looking at how missing pieces of DNA affect the functions of nearby genes. Project title: Functional Genomics of Myotonic Dystrophy Investigator: Charles Thornton, MD. University of Rochester Approval: 2/2003 Study Type: Recruitment Description: This project measured how the abnormal Myotonic Dystrophy gene can cause muscle weakness, muscle stiffness and other signs of myotonic dystrophy. Project title: Clinical Trial of Albuterol and Oxandrolone in FSH Dystrophy Investigator: John Kissel, MD. The Ohio State University Approval: 2/2003 Study Type: Recruitment Description: In this study, two drugs with muscle building qualities were given alone or in combination to determine whether this approach is an effective treatment for people with FSHD.