«Each
of these patient families has been through a long
diagnostic odyssey before taking part in the DDD project,» says Dr Helen Firth, an author from the Department
of Clinical Genetics at Addenbrooke's Hospital.
Although individual tests may be affordable and possibly covered by medical insurance, many patients undergo a
diagnostic odyssey that results in substantial personal expenditures that can exceed $ 100,000 over years
of searching, absence from the workplace, and significant reductions in quality
of life.