2013 News

  • March 15th, 2013
      The Williams Syndrome Organization selects StudyTRAX for international registry. Data from their existing registry will be transferred into StudyTRAX and will become the central mechanism through which to capture the experience of affected families and connect with researchers.
  • February 11th, 2013
      Dr. John Putzke is the guest speaker through the Center for Sleep and Circadian Neurobiology (CSCN) at the 2013 Clinical Research IT Working Group Meetings.
  • June 13th, 2013
      Myocardia selects StudyTRAX as the platform for the Sarcomeric Human Cardiomyopathies Registry (SHaRe). SHaRe brings together a group of experienced, knowledgeable cardiologists and geneticists from the United States and Europe with a passion for helping people with genetic heart disease. By contributing anonymized (de-identified) clinical and laboratory data from the patients and families under their care, these investigators are making this registry one of the largest and most detailed datasets of its kind in this disease area. As part of SHaRe, a companion website has been launched to provide patients, families and communities with information about heritable cardiomyopathies, SHaRe centers and investigators, related research activities and other genetic heart disease information.
  • September 12th, 2013
      Tuberous Sclerosis Alliance decides to transition the Natural History database into StudyTRAX. In 2006, the Tuberous Sclerosis Alliance in partnership with a network of Tuberous sclerosis complex (TSC) Clinics launched the first of its kind project to collect information about this inherited disease, which affects various organs in the human body: brain, heart, kidney, lung, skin, and is associated with developmental disorders such as autism. Updates about a research participant’s condition are entered in the database whenever the TSC Clinic has new information from a follow-up visit, hospitalization, or from diagnostic tests or procedures that have been done.
  • November 19th, 2013
      Dr. Benton Heyworth selects StudyTRAX as the platform for the Clavicle Fracture Registry. This multi-site initiative, coordinating center at the Boston Children’s Hospital, brings together numerous leading academic medical centers in the pursuit of a better understanding of treatment options for clavicle fracture in a pediatric population.