Eaneff et al. – Patient perspectives on neuromyelitis optica spectrum disorders: Data from the PatientsLikeMe online community

Mult Scler Relat Disord. 2017 Oct;17:116-122

by Eaneff S, Wang V, Hanger M, Levy M, Mealy MA, Brandt AU, Eek D, Ratchford JN, Nyberg F, Goodall J, Wicks P

BACKGROUND: Few studies have evaluated patient perspectives on neuromyelitis optica (NMO) and NMO spectrum disorder (NMOSD).
OBJECTIVE: Describe patient-reported clinical and treatment experience in NMOSD and compare disease characteristics of NMOSD with those of multiple sclerosis (MS).
METHODS: This retrospective, observational study included 522 members with NMO or NMOSD (hereafter collectively referred to as NMOSD) from PatientsLikeMe (PLM), an online patient community. Data describing member demographics, symptoms, and treatments were collected, analysed descriptively, and compared with data from PLM members with MS.
RESULTS: Fatigue, pain, and stiffness/spasticity were each rated as moderate to severe by more than half of NMOSD members, and 59% reported that their health limited the type of work or other activities they could perform all or most of the time. Overall, symptom severity and disability levels were comparable between NMOSD and MS members; however, NMOSD members were more likely than MS members to attribute disability to vision-related symptoms and were less likely to report moderate to severe cognitive and emotional symptoms, including brain fog, depressed or anxious mood, and emotional lability.
CONCLUSION: This analysis underscores the challenges of living with fatigue, pain, stiffness/spasticity, and visual difficulties, prevalent NMOSD symptoms among members of the PLM community.

Motognosis was selected for the BIH Digital Health program

We are happy to announce that the startup Motognosis, which originated from the Neurodiagnostics Labs, was selected for the BIH Digital Health program as part of the new BIH and Startupbootcamp collaboration.

Motognosis has already moved into the Startupbootcamp in Berlin Mitte and is now business coached over the next few months.

From the BIH’s press release:

Startupbootcamp, a global network of industry‐focused start‐up accelerators, runs 20 programs across five continents with a mentor and alumni network in over 30 countries. Startupbootcamp Digital Health Berlin is a leading program in Europe supporting innovative companies combining medical knowledge with smart technologies, with a special focus on behavioral change, big data and analytics, diagnostics and genomics.

“This partnership enables us to facilitate knowhow transfer between digital health start‐ups applying new technologies to advanced healthcare problems and the academic hospital Charité – Universitätsmedizin Berlin to benefit patients,” says Dr. Rolf Zettl, CFO and Member of the Executive Board of BIH. “We look forward to also explore collaboration opportunities for transformational digital health solutions with the other partners.” Partners include Philips, Sanofi in Germany, Vilua, Deutsche Apotheker‐ und Ärztebank and Munich Re.

The Startupbootcamp program provides 10 globally‐screened digital health start‐ups with hands‐on mentorship from over 100 industry experts, logistics support, office space in Berlin, and access to a global network of corporate partners and investors from across the healthcare industry. Two teams of Charité innovators are co‐located with the program as Entrepreneurs in Residence to benefit from knowhow transfer with start‐ups and mentors.

“This partnership creates common ground for BIH and SBC with the great potential to bring some truly innovative solutions to the heart of German healthcare,” says Lars Buch, Managing Director of Startupbootcamp Digital Health Berlin.

With this initiative, BIH further strengthens its commitment to supporting translational medicine in digital health, amongst other areas, to improve patients’ health and quality of life.


BIH Press Release

Motognosis Post on Facebook

Motognosis Website