Dr. Rebecca Schüle from the Eberhard Karls University in Tübingen, Germany will present her paper Hereditary spastic paraplegia: Clinicogenetic lessons from 608 patients. Schüle R, Wiethoff S, Martus P, Karle KN, Otto S, Klebe S, Klimpe S, Gallenmüller C, Kurzwelly D, Henkel D, Rimmele F, Stolze H, Kohl Z, Kassubek J, Klockgether T, Vielhaber S, Kamm C, Klopstock T, Bauer P, Züchner S, Liepelt-Scarfone I, Schöls L. Ann Neurol. 2016 Apr;79(4):646-58. doi: 10.1002/ana.24611. Epub 2016 Mar 11.
About the paper:
A copy of this paper is available here: http://onlinelibrary.wiley.com/doi/10.1002/ana.24611/full
For more than a decade we have collected clinical data on more than 600 HSP patients, the largest compilation of clinical data on HSP so far. Using this data we are now able to reliably answer many everyday questions. When does HSP start? Are the seizures I'm experiencing part of my HSP or a symptom of an independent disease? Are men more frequently affected than women? How is the long-term prognosis; how long will I be able to walk independently? Is loss of ambulation and wheelchair dependency inevitable? In addition, the data on disease manifestation, disease modifying factors and progression rate are essential to plan and conduct clinical trials in HSP in the future.
Date: Monday, Oct 10, 2016
Time: 2PM Eastern Standard Time
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CReATe Connect Team
About the CReATe Virtual Journal Club
The CReATe Virtual Journal Club is designed to help patients and families understand and discuss recent scientific papers about motor neuron diseases. The articles are selected by patients and families enrolled in CReATe Connect.
We are excited that Giving Tuesday is coming up soon. It is a once a year event and is a perfect accent to the holiday season. Unbeknownst to the commercial world, the holiday season is not about who gets more for me, me, me. It is about that special feeling you get when you know you have really helped out someone you care about or love. It is knowing that the dollar you give today is going to blossom into a million dollars worth of relief from suffering for the people with HSP and PLS. Welcome to Giving Tuesday and we Thank You for your consideration.
When Clinical Trials begin in 2017 it may require as many people as possible for the Clinical Trial to be effective. If you have HSP or PLS, please add your information to our data base so we can keep you informed. We are missing a lot people's email address, so if you just want to add your email address. just enter your name, address and email and we'll add it. That way, we will be able to reach you quickly at a lower cost. Your privacy is very important to us. We will never share any of your information with any individual or company without your permission.
We operate out of the strength of our community, caring friends and sponsors. Your help makes a difference! Our volunteers give many hours of their time annually, and the opportunities to help are as varied as our helpers. Read more.