Newron Pharmaceuticals, a biopharmaceutical company focused on the development of novel therapies for patients with diseases of the central and peripheral nervous system, as part of its commitment to finding a treatment for the symptoms of Rett syndrome, is partnering with the global Rett community to sponsor the first-ever International Rett Syndrome Burden of Illness Survey.
Rett syndrome is a severe neuro-developmental orphan disease with no approved treatment options and overwhelmingly affects girls starting at a very young age.
The survey outreach, to launch November 1st in the United States and in early 2020 in Europe under the banner “Voices of Rett,” aims to deliver data and analytics to quantify the physical, emotional and financial challenges of Rett syndrome on patients, their families, caregivers and the entire Rett patient community. The results will help identify and guide improved intervention programs and services designed to complement the Rett care pathway.
This international Burden of Illness Survey is being conducted by an independent, international Clinical Research Organization in collaboration with Rett syndrome advocacy groups worldwide, along with an advisory panel of experts comprised of physicians, caregivers, advocacy representatives and academic researchers.
More information: https://www.newron.com/en