Accelerate research.
Alport Syndrome Alliance will facilitate patients, academia, clinicians and industry to work together to enlarge the scope of research.
Research
Develop a strategy to identify innovative research opportunities and actively promote such research studies to be conducted, research expertise and partnerships and to fund initiatives
Source funding for new research initiatives, where necessary
Focus on strengthening the ties between academia and industry in order to assure the alignment of each group’s needs and thus potentially enhance, accelerate and maximize success for all
Ensure maximum data and information are readily available for research. This will include building international information resources such as: a global registry, a global biobank, an open sourced genetic data toolbox as well as any other information tools that may become relevant in the future
The national groups will work together to pool resources, connect and build a research registry portal and biobank to provide a critical mass of accessible data for use in clinical research