It takes „about one year from the first symptoms to the first consultation of a physician, and another one year to reach a diagnosis. And then patients with this diagnosis are sent to specialized centres” – which are ERNs.
Our member Robert Rusina is referring to a speech language disorder, known as Primary Progressive Aphasia (PPA), for which diagnosis is often delayed and therapeutic options sparse. So after this long journey is over and patients can be treated – how does clinical practice for PPA in ERN-RND centers look like?
A survey among ERN-RND centers (physicians, neurologists, psychiatrists), specialized in Frontotemporal Dementia was conducted in order to evaluate current clinical practice with regards to available PPA management options (like referral pathways, proportion subtypes, speech and language therapy).
For a taste of what is to come in the paper, watch our video interview with Robert Rusina here.