Demistifying the use of patient health data in research:
Join this virtual meeting on Tues 5 December 6-7.30pm.
The UK National Health Service provides lifelong health care for almost everyone in the country and the anonymous data from the NHS has proved uniquely powerful in helping the world find answers to some of the biggest health questions of our times. Use of anonymous NHS and other databases has enormous potential to improve understanding of rare diseases like dyskeratosis congenita and telomere biology disorders. DEMISTIFI is a project looking at fibrosis (scarring), which is of great concern to our community, since it is the cause of many severe DC complications, including lung fibrosis, liver cirrhosis and strictures (narrowing of the gullet, tear ducts or urinary passages). Come to this meeting to hear from UK’s big data professors as to how this data can help us in our quest for better understanding and future medical care.
Register for this event here