The Genetic Alliance Biobank and First Genetic Trust, Inc., Announce Partnership to Develop StateoftheArt BioData Tissue Banking and Clinical Research Capability to Enable Translational Genetic Research Aimed at Developing New Therapies For Rare Diseases.

(From AScribe)

WASHINGTON -- In a first bold step to enable individuals and advocacy organizations to partner more effectively with researchers on genetic research which may lead to new safe and effective treatments for rare genetic diseases, the Genetic Alliance BioBank [GAB] has formed a partnership with First Genetic Trust, Inc. [FGT].

GAB announced today FGT has been selected as its technology partner to provide a comprehensive information technology infrastructure for managing its tissue and data banking, and executing clinical therapeutic trials. The FGT technology will be used initially to manage collaborative research programs within and across three leading rare disease research foundations, the National Psoriasis Foundation, The Inflammatory Breast Cancer Research Foundation, and PXE International.

FGT will deploy and host its web-based enTRUST Genetic Banking and Study Management system to enable the participating Foundations to create central repositories of well-phenotyped patients, with essential genetic and biologic samples. The BioBank will integrate laboratory and clinical trial data, track the status of participant enrollment in research and therapeutic studies, monitor compliance with study protocols, and enable rapid exchange of data among researchers and multiple research laboratories while protecting the security and confidentiality of patient information. All data aggregation will be done in a manner compliant with HIPAA and Good Clinical Practices.

The GAB s centralized clinical, tissue and data banks will enable a subset of our member foundations to execute an integrated research model, said Sharon Terry, Chairman and President of the GAB. FGT s enTRUST applications will enable us to collect and manage the critical mass of high quality samples and supporting data, for specific rare diseases, in a manner that is efficient and effective for smaller scale research foundations.

Arthur Holden, Chief Executive Officer of FGT, said: Today s announcement is an important step in advancing the application of state-of-the-art information technology to bring the capability of transactional genomic research and development activities to smaller research foundations and rare genetic diseases. We are honor to be working to ...