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Leading the Fight to treat and cure
Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Research

Research abstracts, publications, NTSAD initiatives, and Tay Sachs Gene Therapy Consortium (TSGT)

Categories

Folder Subcommittee on Experimental Therapies

The goal of the subcommittee is to evaluate clinical trials or other proposed therapies for Tay-Sachs, GM1, Sandhoff, Canavan and related diseases to educate families regarding trials and how to assess a proposed new or untested therapy. Papers written on different topics of therapies and/or clinical trials will be saved in this folder.

Folder Tay-Sachs Gene Therapy

Semi-annual progress reports published by TSGC on gene therapy research.

Documents

pdf NTSAD 2016-2017 Request for Proposals Application and Guidelines Popular

1107 downloads

Download (pdf, 394 KB)

RFP Guidelines 2017.pdf

pdf Late Onset Medication Effects Study Presentation Popular

467 downloads

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LateOnset-Medication-Survey-062504-PPT.pdf

Medication Survey in Patients with LOTS
Kyle Anthony, BAKyle BA
Susan HattersSusan Hatters--Friedman, M.D.
Jose Americo Fernandes Filho, M.D.
Barbara E. Shapiro, M.D.,Ph.D.
University Hospitals of Cleveland University Cleveland
Case Western Reserve University School of Medicine Case Medicine

pdf Late Onset Medication Study (c.2004) Popular

1225 downloads

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LateOnset-Adverse-Effects-of-Medications-Neurology2006.pdf

Abstract—

The authors conducted a retrospective and brief prospective study of adverse effects of approximately 350 medications in 44 adults with late onset Tay–Sachs disease (LOTS). Some medications were relatively safe, whereas others, particularly haloperidol, risperidone, and chlorpromazine,
were associated with neurologic worsening.

pdf NTSAD 2015-2016 RFP Guidelines Popular

710 downloads

Download (pdf, 471 KB)

RFP Guidelines 2015-16.pdf

2016 Request for Proposal announced.  Pre-applications due December 22.

NTSAD is soliciting proposals for innovative research projects that involve basic research, translational studies or clinical studies in the areas of neurodegenerative disorders affecting the CNS, including lysosomal storage disorders (particularly Tay-Sachs, GM-1, Sandhoff) and pediatric leukodystrophies (in particular Canavan disease).

 

pdf 2015 NTSAD Science Symposium & Workshop Agenda Popular

569 downloads

Download (pdf, 629 KB)

NTSAD Scientific Symposium and Workshop agenda for April 16 2015.pdf

A schedule for the NTSAD Science Symposium & Workshop to be held April 16, 2015 in Reston, Virginia at the Hyatt Regency hotel. 

 

pdf Lysosomal Disease Network Fellowship Grant Popular

545 downloads

Download (pdf, 99 KB)

LDN-FELLOWSHIP-APPLICATIONS-2015.pdf

The Lysosomal Disease Network accepting applications until Friday, February 6th, 5:00 PM (CST).

pdf 2014-2015 Request for Proposals Guidelines UPDATED Popular

578 downloads

Download (pdf, 472 KB)

RFP Guidelines updated FINAL with updated due date.pdf

pdf NTSAD 2014-2015 RFP Guidelines Popular

417 downloads

Download (pdf, 543 KB)

RFP Guidelines WEB.pdf

Updated guidelines can be found here with new deadlines. 

 

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