Fidest – Agenzia giornalistica/press agency

Quotidiano di informazione – Anno 31 n° 321

Nonprofit CureDuchenne Launches Biobank to Fuel Research for Duchenne Muscular Dystrophy

Posted by fidest press agency su martedì, 15 ottobre 2019

CureDuchenne, a global leader in research, patient care, and innovation in improving and extending the lives of those living with Duchenne muscular dystrophy (Duchenne), announced today it has initiated the development of a biobank for Duchenne. The CureDuchenne Biobank is dedicated to empowering Duchenne research and the search for a cure for Duchenne that is independent and accessible to all researchers.In partnership with Dr. Tahseen Mozaffar of the University of California, Irvine (UCI) for strategic development and implementation, and with RUDER Infinite Biologics (RUCDR), the world’s largest university-based biorepository, for biobanking services, the CureDuchenne Biobank plans to begin sample collecting immediately at CureDuchenne Cares events around the country.“CureDuchenne is committed to supporting projects that could lead to a cure for Duchenne. But with limited resources to conduct research, scientists at academic institutions, biotechnology and pharmaceutical companies are not able to conduct the work necessary to find a cure for every child with Duchenne,” said Debra Miller, founder and CEO, CureDuchenne. “To fill that gap, it’s important to provide researchers with free and unrestricted access to the cell lines they need for Duchenne research,” Miller added. “Advances in precision medicine rely on open access biobanks with human biological specimens for analysis with the latest technologies long after the time of their collection,” said Dr. Andrew Brooks, chief operating officer, RUDCR Infinite Biologics. “We are thrilled to add Duchenne to the growing list of biobanks to help cure genetic diseases like Duchenne,” Dr. Brooks added.Minimally invasive blood and skin tissue samples will be requested on a voluntary basis from patients and, if possible, from their unaffected immediate blood relatives (parents, siblings or adult children) who may be interested in supporting scientific studies. To help ensure that Duchenne patients from all population groups can potentially benefit from the research, Duchenne patients from diverse age ranges, ambulatory status, genetic mutations and racial, cultural and socioeconomic groups are strongly encouraged to participate in this initiative.By donating specimen to the dedicated CureDuchenne Biobank, families will: enable the development of patient cell lines specialized to their child’s gene mutation that can be used by any researcher to develop customized treatments; contribute to genetic studies to understand how any of the mutations in the body affect disease progression and response to therapies; and contribute to research investigating how to harness the immune response to allow for more effective treatment.The proposed CureDuchenne Biobank board will consist of experts in biorepositories and registries, technology transfer, genetics, neuromuscular disease, immunology and ethical, legal and social issues. Dr. Tahseen Mozaffar and Dr. Armando Villalta, assistant professor, Department of Physiology & Biophysics, UCI School of Medicine are leading the CureDuchenne Biobank board. Together with CureDuchenne executives, the governing board will determine access to the CureDuchenne Biobank collection. Deidentified data and samples will be released to approved researchers in Duchenne.

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