Congratulations to GRIN Advisory Board member, Professor Joshua Burns, for being recognized by the Australian Academy of Health and Medical Sciences for his outstanding contributions to medical and health sciences.
“Fellows are elected by their peers for their significant contributions to health and medical sciences – it is a selective process that recognizes the best and brightest in Australia and highlights those who are truly making a difference in health,” said the Academy’s Interim President Professor Ingrid Scheffer AO FRS FAA FAHMS.
Professor Burns is the inventor of ClinicalOutcomeMeasures.org, a web-based scoring system for monitoring response to therapy, housing key clinical trial endpoints such as the Charcot-Marie-Tooth Pediatric Scale (CMTPedS), CMT Functional Outcome Measure (CMT-FOM), CMT Infant Scale (CMTInfS), Rasch-modified CMT Neuropathy Score (CMTNSv2-R) and items from the 1000 Norms Project. This work is critical to the preparation for clinical trials for the treatment of the CMT.
HNF recently launched its CMT Pediatric Natural History Study project in which clinical evaluation data will be collected in the Global Registry for Inherited Neuropathies (GRIN), in addition to the patient-reported data and genetic reports. In August, an associate of Dr. Burns, Dr. Kayla Cornett, PhD, trained and certified the Physical Therapy and Occupational Therapy staff at both Lurie’s Children’s Hospital and Arkansas Children’s Hospital. The certification is required to conduct the CMT Pediatric Scale and the CMT Infant Scale, both of which are a part of the clinical evaluation for our CMT Pediatric Natural History project. This study is currently in progress.
If you would like to inquire about participation in this study, please contact [email protected].