News

April 16, 2018

Genentech to Present New RG7916 Data at the American Academy of Neurology (AAN) Annual Meeting

Genentech to Present New RG7916 Data at the American Academy of Neurology (AAN) Annual Meeting

Genentech/Roche announced today that new data on its approved and investigational medicines for neurological conditions will be presented during the 70th American Academy of Neurology (AAN) Annual Meeting from April 21-27 in Los Angeles, California. The data will include investigational...

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Topics: Clinical Trials, Research, Front Page News

March 29, 2018

Scholar Rock Granted Orphan Drug Designation by the FDA for SRK-015 for the Treatment of Patients with SMA

Scholar Rock Granted Orphan Drug Designation by the FDA for SRK-015 for the Treatment of Patients with SMA

Scholar Rock today announced that the U.S. Food and Drug Administration (FDA) has granted Orphan Drug...

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Topics: Clinical Trials, Research, Front Page News

March 15, 2018

Roche Releases Community Statement on RG7916 and Olesoxime Programs

Roche Releases Community Statement on RG7916 and Olesoxime Programs

Roche has provided the following community statement on RG7916 and Olesoxime investigational programs. 

Dear SMA Community, 

We are very pleased to share an update of the Roche SMA program We have two investigational molecules in development for people with SMA,...

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Topics: Clinical Trials, Research, Front Page News

March 12, 2018

Biogen Announces New Interim Phase 2 Results From NURTURE

Biogen Announces New Interim Phase 2 Results From NURTURE

Biogen recently announced new interim Phase 2 results from NURTURE, the ongoing open-label, single-arm study evaluating the efficacy and safety of SPINRAZA or nusinersen among pre-symptomatic infants with spinal muscular atrophy. Additionally, data from a case series conducted on...

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Topics: Clinical Trials, Research, Front Page News

February 21, 2018

Phase 2 Clinical Trial Results for CK-2127107 Expected in Second Quarter of 2018

Phase 2 Clinical Trial Results for CK-2127107 Expected in Second Quarter of 2018

Cytokinetics is currently conducting a Phase 2 clinical trial of CK-2127107 – now referred to by the generic name, reldesemtiv – which is designed to assess the investigational agent’s effect on multiple measures of muscle function in both ambulatory and non-ambulatory...

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Topics: Clinical Trials, Research, Front Page News

February 14, 2018

Biogen Releases Statement on CHERISH Data and Plans for New Clinical Research

Biogen Releases Statement on CHERISH Data and Plans for New Clinical Research

Biogen has provided the following community statement on the final results from CHERISH, a Phase 3 study of SPINRAZA. 

Dear Members of the SMA community,

This past December marked one year since the FDA approval of SPINRAZA® (nusinersen), the first and only treatment...

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Topics: Clinical Trials, Research, Front Page News

February 1, 2018

AveXis Releases Community Statement on STR1VE

AveXis Releases Community Statement on STR1VE

AveXis has provided the following community statement on AVXS-101.

Dear SMA Community,

AveXis, the gene therapy company developing a new approach to treat SMA known as AVXS‐101, is pleased to initiate screening for the remaining patients to be enrolled in the pivotal trial of...

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Topics: Clinical Trials, Research, Front Page News

January 30, 2018

Preliminary Data from FIREFISH Trial in Type 1 SMA Infants Presented at the International Scientific Congress on Spinal Muscular Atrophy

PTC Therapeutics, Inc. recently announced the presentation of early interim data from Part 1, the dose-finding portion of the FIREFISH study. FIREFISH is a two-part seamless, open-label, multi-center study to investigate the safety and efficacy of RG7916 in infants and babies with Type 1 SMA. RG7916 has been safe and well tolerated at all...

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Topics: Clinical Trials, Research, Front Page News

January 26, 2018

AveXis Releases Community Statement on Expanded Clinical Trials

AveXis Releases Community Statement on Expanded Clinical Trials

AveXis has provided the following community statement on AVXS-101. 

Dear SMA Community, 

At AveXis, the gene replacement therapy company developing a new approach to treat SMA known as AVXS-101, we recently announced our plans to start three new clinical...

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Topics: Clinical Trials, Research, Front Page News

January 25, 2018

Cure SMA to Host Webinar on Treatment Access and Clinical Trials on February 15

Cure SMA to Host Webinar on Treatment Access and Clinical Trials on February 15

On Thursday, February 15, at 12:00pm CST (10:00am PST/11:00am MST/1:00pm EST), Cure SMA will hold a webinar updating the community on treatment access and clinical trials. Among the topics covered will be: 

  • The current status of Spinraza access, including dosing, sites, and...

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Topics: Community & Awareness, Clinical Trials, Front Page News

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