Why have we formed the IRC5?

The IRC5 was formed to accelerate discoveries about causes and outcomes of disorders of the corpus callosum and associated changes in cerebral connectivity.  Due to the diversity in clinical syndromes and the rarity of these conditions means that we need to pool our resources and knowledge to tackle DCC. Collaborative efforts will foster more productive scientific research by providing investigators with access to larger patient groups for research and future clinical trials of treatment strategies.

Larger groups and coordinated research efforts are key to discovering the genetic cause of these disorders. Furthermore, through collaboration of basic scientists and clinical researchers we aim to provide better diagnostic and prognostic tools for families and doctors to inform their treatment and to develop coping strategies for infants, children and adults living with these disorders.

Finally, IRC5 will provide a focus for direct funding of research into disorders of the corpus callosum and associated disorders of cerebral connectivity. Scientific research is expensive. Researchers studying rare disorders face the added challenge of competing against funding requests for studies of more common diseases such as cancer, heart and lung diseases, and diseases of aging. Governments in all countries struggle to find the necessary financial resources to properly fund research, and the public support of taxpayers who help to fund scientific research is therefore crucially important. Given these challenges, philanthropic donations can make the biggest difference to accelerating discoveries in this field.