News

Huntington Study Group Launches Project AWARE 2.0 Observational Study

Huntington Study Group Launches Project AWARE 2.0 Observational Study Rochester, NY – April 10, 2024 – The Huntington Study Group® and HSG Clinical Research, Inc. (together, “HSG”) are pleased to announce the launch of Project AWARE 2.0, an observational study developed in collaboration with Roche Products Limited and Genentech to understand and improve Awareness, Willingness,
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Huntington Study Group Announces 2024 Annual Meeting

Rochester, NY — January 22, 2024 — The Huntington Study Group® (HSG), together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in conducting clinical trials for Huntington’s disease (HD), is pleased to announce that its annual meeting for 2024 is slated to take place from November 6-9 at the Hyatt Regency in Cincinnati,
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HSG UPDATES – December 2023

December 2023 1.   CEO’s Insights As we wrap up our 30th year at Huntington Study Group, it’s a moment to look back and take stock of what we’ve accomplished. This year has been about growth, leaning into the strong relationships we’ve built within our research network, and embracing the HSG way of learning and
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Huntington Study Group® and Roche Collaborate on Generation HD2 Study

Rochester, NY — December 13, 2023 — The Huntington Study Group together with its wholly-owned clinical research organization, HSG Clinical Research, Inc. (HSGCR), is pleased to announce a collaboration with Roche-Genentech to optimize our collective experiences in Huntington’s disease (HD) clinical research. Together we are working to understand the recruitment and enrollment needs of Roche’s GENERATION HD2
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Huntington Study Group® Holds 30th Annual Meeting 

Rochester, NY — November 20, 2023 — The Huntington Study Group® (HSG®), a world leader in conducting clinical trials and providing educational programming for Huntington’s disease (HD), recently held its 30th annual meeting, HSG 2023, November 2-4 in Phoenix, AZ. Hundreds of scientists, industry partners, HSG research sites and members, advocacy groups, staff, HD patients, families, and
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Huntington Study Group® Observational Pilot Study Shows HSG’s myHDstory®  Platform Reaches the Unreachable

Rochester, NY, October 11, 2023 – The Huntington Study Group® (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc. (HSGCR), a world leader in conducting clinical trials for Huntington’s disease (HD), today announces that the pilot observational study on their innovative online direct-to-patient research platform, myHDstory®, is complete with unprecedented topline results. The
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HSG UPDATES – September 2023

September 2023MAKING AN IMPACT 1.   CEO’s Insights In memory of Christine Hunter, someone who was devoted to making an impact on the Huntington’s disease community with her skills, talent, and heart, we are dedicating this issue of HSG Updates to the theme of impact. While we have had some big wins, we recognize these are some battles won
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 Huntington Study Group Welcomes FDA Approval of New Drug for Chorea in Huntington’s Disease 

Rochester, New York, August 18, 2023 – The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in clinical trials for Huntington’s disease (HD), today shares that the Phase 3 pivotal KINECT®-HD study conducted by HSG in collaboration with Neurocrine Biosciences, Inc. resulted in the U.S. Food and Drug
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Huntington Study Group Announces Positive Topline Results for Virtual Unified Huntington’s Disease Rating Scale® (vUHDRS®) Study

The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in conducting clinical trials for Huntington’s disease (HD), today announces positive topline results from its Virtual Unified Huntington’s Disease Rating Scale® (vUHDRS®) observational study. This novel, innovative study assessed the reliability of virtual use of the HSG’s
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Huntington Study Group and CHDI Foundation Collaborate on Enroll-HD

Rochester, NY and New York City, NY, July 25, 2023 — HSG Clinical Research, Inc. — the Huntington Study Group’s clinical research organization (CRO) and wholly owned subsidiary (collectively referred to here as HSG) — has begun providing CRO services for CHDI Foundation’s Enroll-HD observational study and clinical research platform in the USA and Canada.  “CHDI
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Huntington Study Group Announces Call for Abstracts for the 30th Annual Meeting

Rochester, NY – June 1, 2023 – The Huntington Study Group (HSG), with a mission of accelerating treatments that make a difference for those impacted by Huntington’s disease, together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in conducting clinical trials for Huntington’s disease (HD), today announces that the submission period has begun for
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Neurocrine Biosciences Announces Publication of Full KINECT™-HD Phase 3 Study Results of Valbenazine for the Treatment of Chorea Associated with Huntington’s Disease in The Lancet Neurology 

Neurocrine Biosciences, Inc. today announced that the complete study results from its Phase 3 KINECT™-HD study investigating valbenazine for the treatment of chorea associated with Huntington’s disease (HD) has been published in The Lancet Neurology online edition and will appear in the June 2023 print issue. The study met its primary and secondary endpoints, demonstrating a reduction in
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Huntington Study Group Achieves Last Patient Last Visit for Its Observational Study to Test Virtual Use of the Unified Huntington’s Disease Rating Scale®

Rochester, NY – May 16, 2023 – The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., announces an important milestone in the novel observational study Virtual Unified Huntington’s Disease Rating Scale (vUHDRS™). The last participant completed the last visit, marking study completion. The purpose of this study is to determine the reliability
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HSG and HD-CAB Collaborate to Provide Global Patient Advisory Board

Rochester, NY, March 30, 2023 — The Huntington Study Group (HSG) together with its wholly owned subsidiary, HSG Clinical Research, Inc., a world leader in conducting clinical trials for Huntington’s disease (HD), recently collaborated with Huntington’s Disease – Community Advisory Board (HD-CAB) to provide a Global Patient Advisory Board on behalf of Annexon Biosciences, Inc. Annexon
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HSG Announces 30th Annual Meeting

Rochester, NY — March 21, 2023 — The Huntington Study Group (HSG), a world leader in conducting clinical trials and providing educational programming for Huntington’s disease (HD), recently announced that their 2023 Annual Meeting will be held November 2-4, 2023 at the Sheraton Grand at Wild Horse Pass in Chandler, AZ, a little south of Phoenix.
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Huntington Study Group Names First Chief Innovation Officer

Rochester, NY — January 10, 2023 — The Huntington Study Group (HSG), a world leader in clinical research for Huntington’s Disease (HD) for over 30 years, today announced Brett Kinsler has been named to the newly created position of Chief Innovation Officer (CINO). Kinsler will build on HSG’s remarkable history of mission-focused, transformative advances in clinical trial work
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Clinical Research Organization, Huntington Study Group “Firsts” Continue

Rochester, NY – December 5, 2022 – The Huntington Study Group (HSG), a world leader in conducting clinical trials for Huntington’s Disease (HD), through its Clinical Research Organization (CRO), HSG Clinical Research, Inc. (HSGCR), continues making groundbreaking progress in the HD world. At their Annual Meeting in November, the HSG team presented exciting updates about
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Huntington Study Group Annual Meeting

Rochester, NY – November 29, 2022 – The Huntington Study Group (HSG), a world leader in conducting clinical trials for Huntington’s Disease (HD), recently held its 29th Annual Meeting in Tampa, FL. This renowned meeting brings together HD thought leaders, scientific experts, industry partners and sponsors, advocacy groups, and HD family and community members from
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Huntington Study Group Announces Results from the HD-Net Assessment on the State of Care for Huntington’s Disease in the United States

Rochester, NY — October 25, 2022 — The Huntington Study Group (HSG), a world leader in clinical research for Huntington’s Disease (HD) for over 30 years, is pleased to announce the results from the novel HD-Net survey, which examined the United States Huntington’s disease (HD) care delivery in a variety of clinic settings by HD specialists and non-specialists.
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Huntington Study Group Announces myHDstory™ Pilot Study:  Making HD Voices ­­­Heard Has Reached Target Enrollment

Rochester, N.Y. — October 18, 2022 — The Huntington Study Group (HSG), a world leader in clinical research for Huntington’s Disease (HD) for over 30 years, is pleased to announce that the pilot study, Making HD Voices Heard, on the new online research platform, myHDstory™, has reached its enrollment target.  “The HSG is beyond thrilled by the level
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Huntington Study Group Enrolls First Participant for Its Observational Study to Test the Reliability of the Virtual Use of the  Unified Huntington’s Disease Rating Scale® in Clinical Trials for Huntington’s Disease

Rochester, N.Y.  — October 12, 2022 — The Huntington Study Group (HSG), a world leader in conducting clinical trials for Huntington’s Disease (HD) for over 30 years, together with its Clinical Research Organization (“CRO”), the HSG Clinical Research, Inc., today announces the enrollment of the first participant of its novel and innovative observational study, Virtual Unified Huntington’s
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HSG UPDATES: vUHDRS® Study Update

July 2022 The Unified Huntington’s Disease Rating Scale (UHDRS®) was established to routinely assess motor, cognitive, behavioral and function in Huntington disease (HD) in a standardized fashion in 1996. Since that time we have evolved. We have computers in our pocket and the Internet was invented as a great tool. We have developed and tested
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Meet the HSG Clinical Research, Inc. (HSGCR) Management Team – The HSG’s CRO

July 2022 HSG Clinical Research, Inc. (HSGCR) was established as a wholly owned for-profit subsidiary of the Huntington Study Group, LTD (HSG) to focus exclusively on delivery the best project management and core operations for clinical research in Huntington disease. Overseeing key roles in leading the HSGCR are some familiar faces with long time service
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HSG UPDATES: Seeking Self-Nominations for Upcoming EMC Investigator & Coordinator Election

July 2022 Dear HSG Investigator and Coordinator Members, Thank you for participating in the election of the Co-Chairs of the HSG Executive Membership Committee. There are additional opportunities still available, and your participation is once again requested! As announced at the HSG town hall meetings back in January and February, after the EMC Co-Chairs election,
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HSG UPDATES: HSG Executive Membership Committee Elected Co-Chairs Begin in New Role

July 2022 On May 12, 2022, Sandra Kostyk (Ohio State) and Sam Frank (Beth Israel Deaconess Medical Center) were elected to serve as Co-Chairs of the Executive Membership Committee (EMC) of the nonprofit Huntington Study Group LTD (HSG). We are pleased to now officially welcome Sandra and Sam into their new role as of July
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HSG UPDATES: Current Clinical Trials – KINECT-HD2 and PROOF-HD

—– July 2022 KINECT-HD2 is being conducted by Neurocrine Biosciences, Inc. (“Sponsor”) in partnership with the Huntington Study Group (HSG). KINECT-HD2 is an open-label, multi-center study with sites across the US and Canada and aims to investigate the long-term safety and tolerability, as well as the maintenance of effect of valbenazine for the treatment of
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We’re Back! HSG 2022 ANNUAL MEETING Returns to In-Person

July 2022 Start Booking Your Travel Now – HSG 2022 ANNUAL MEETING Returns to In-Person! Special Sessions –by invitation only(Wednesday & Thursday Morning) HSG EXPO & General Sessions(Thursday Evening & Friday) FAMILY DAYSymposium(Saturday) HSG is hosting this year’s ANNUAL MEETING in-person at the Grand Hyatt Tampa Bay in sunny Tampa, Florida on November 3-5, 2022.
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HSG UPDATES: myHDstory™ Pilot Study Celebrates Major Milestone

July 2022 The HSG is excited to share that the pilot study, Making HD Voices Heard, on the new online research platform, myHDstory™, has reached its first enrollment milestone!   “The HSG is beyond thrilled by the level of participation in this first-of-its-kind study. We are extremely grateful to all the Making HD Voices Heard
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Neurocrine Biosciences Announces Positive Phase 3 Data for KINECT-HD Study Evaluating Valbenazine for Chorea Associated with Huntington Disease

SAN DIEGO, Dec. 7, 2021 – Neurocrine Biosciences (Nasdaq: NBIX) today announced positive top-line data from its Phase 3 KINECT-HD study evaluating the efficacy, safety and tolerability of valbenazine, a selective vesicular monoamine transporter 2 (VMAT2) inhibitor being investigated as a once-daily treatment in adults with chorea associated with Huntington disease (HD). View full press
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Huntington Study Group Announces A Partnership with Prilenia Therapeutics to Conduct A Global Phase 3 Clinical Study of Pridopidine in Huntington’s Disease

Rochester, N.Y.  — September 17, 2020 —The Huntington Study Group (“HSG”), a world leader in clinical research for Huntington’s Disease (HD), announces a partnership with Prilenia Therapeutics, a clinical stage biotech company led by Michael R. Hayden, MD, PhD, to conduct PRidopidine Outcome On Function in Huntington’s Disease (PROOF-HD) clinical study.  PROOF-HD is a global
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Huntington Study Group Launches New CME Accredited Interactive Case Study Courses

The Huntington Study Group (HSG), a world leader in spearheading research and conducting clinical trials in Huntington disease (HD), has launched a new offering to its acclaimed CME4HDTM online learning curriculum. The 2020 edition of CME4HDTM features seven interactive case studies that build upon the faculty lecture content launched last year (2019). Learners are presented with real
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HSG Announces Virtual Annual Meeting in 2020

The Huntington Study Group announced that it is taking the early and proactive step of moving this year’s annual meeting, HSG 2020: HD IN FOCUS, to a virtual experience during October 29-31, 2020. “While we will not gather together this year in-person, we have developed an interesting, novel, and innovative program that will be brought
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Publication of Clinical Guidelines for Physical Therapy in Huntington Disease

For Immediate Release: February 27, 2020 The Huntington Study Group (HSG), a world leader in spearheading research and conducting clinical trials in Huntington disease (HD), is excited to announce that the final Clinical Guidelines for Physical Therapy in Huntington’s Disease, and the final report for the Guidelines Development Group have been published in the journal
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Huntington Study Group Announces Initiation of Phase III Clinical Study of Valbenazine for the Treatment of Chorea Associated with Huntington Disease

For Immediate Release: November 14, 2019 The Huntington Study Group (HSG), a world leader in spearheading research and conducting clinical trials in Huntington disease (HD), today announced the initiation of KINECT-HD, a Phase III clinical study of valbenazine, a selective vesicular monoamine transporter 2 (VMAT2) inhibitor, for the treatment of chorea associated with HD. Chorea,
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Huntington Study Group Spotlighted on Rochester, NY Television

For Immediate Release: April 12, 2019 The Huntington Study Group (HSG) was recently featured on morning programming at two local news stations in Rochester, NY. WROC News Channel 8 (CBS affiliate) and Fox Rochester (WUHF) scheduled appearances by the HSG following the recent announcement of their 100th credentialed research site in North America. The interviews
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Huntington Study Group Achieves 100th Credentialed Research Site Milestone

For Immediate Release: March 25, 2019 The Huntington Study Group (HSG), a world leader in spearheading research and conducting clinical trials in Huntington disease (HD), is excited to announce that it has credentialed Inland Northwest Research, LLC as the 100th HSG site in North America. “On behalf of myself and our site I wish to
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The Huntington Study Group Announces New Education Committees

Rochester, NY – March 11, 2019 Today the Huntington Study Group (HSG) announced the restructuring of its Education Committee into four distinct committees aligned with the organization’s overall strategic plan for educational programs. The four committees that will lead the HSG’s current and planned education initiatives are: Member Education, Provider Education, Family Education, and Annual
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HSG Announces Launch of CME4HD 2019 – Accredited Online Education Platform

Beginning February 1, 2019, the Huntington Study Group (HSG) will offer the latest update to its popular online learning program, CME4HD. Once again, CME4HD courses will be offered free of charge thanks in part to an educational grant from Teva Pharmaceuticals. CME4HD originally began as in-person training on Huntington’s disease (HD) at the HSG’s annual
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HSG Announces Location for 2019 Annual Meeting

The Huntington Study Group announces Sacramento, California as the location for this year’s annual meeting: HSG 2019. Dr. Vicki Wheelock and her team at our UC Davis site will serve as the HSG Host Site for what has long been the organization’s hallmark event, bringing together leaders in HD research, the HD community, sponsors, and
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Dr. Nicolò Zarotti Named Recipient of the Peter Como Scholarship

The Huntington Study Group (HSG) is pleased to announce the that Dr. Nicolò Zarotti has been named recipient of the Peter Como Scholarship to attend the renowned annual meeting. Dr. Zarotti obtained his Bachelor’s and Master’s degree in Psychology in Italy, and later joined Lancaster University (UK), where he completed his PhD focused on emotional
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Huntington Study Group Welcomes New Leadership May 1

The Huntington Study Group (HSG) is pleased to announce that Andrew Feigin, MD, and Elise Kayson, MS, ANP, have been elected as the chair and co-chair, respectively, of HSG, a world-wide network of Huntington disease (HD) researchers. Both Feigin and Kayson have dedicated their careers to the clinical care of patients and families and research
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Overnight Switch from Tetrabenazine to Deutetrabenazine Safe, Trial Shows

JAMA Neurology paper published today from ARC-HD Trial People with Huntington disease-associated chorea can safely convert overnight from tetrabenazine to deutetrabenazine (brand name: Austedo), according to the results of the Alternatives for Reducing Chorea in Huntington Disease (ARC-HD) trial published yesterday in JAMA Neurology. The Phase III open-label, single-arm switch cohort of the trial was
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FDA Approves Second Drug for Huntington Disease Symptom

The U.S. Food and Drug Administration (FDA) today approved SD-809 (deutetrabenazine), the second drug approved for use in the United States to treat chorea in Huntington disease (HD), a rare, inherited neurodegenerative disorder. The approval was based on positive results from the First-HD study, a Phase 3 clinical trial which was led by the Huntington
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Vaccinex Receives FDA Fast Track Designation for VX15 Antibody for the Treatment of Huntington’s Disease

Vaccinex, Inc. today announced that the U.S. Food and Drug Administration (FDA) has granted Fast Track designation for VX15 as a potential treatment for Huntington’s disease (HD).  VX15 is the Company’s novel clinical stage monoclonal antibody that blocks the activity of semaphorin 4D (SEMA4D), a molecule that is believed to promote chronic inflammatory responses in
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Chorea Reduced by Deutetrabenazine in Study led by HSG

JAMA publishes First-HD study People with Huntington disease experienced improvements in chorea while taking deutetrabenazine (SD-809) compared to placebo, according to a paper published today in the Journal of the American Medical Association (JAMA). Although the topline results of the trial have been released previously, the complete peer-reviewed publication about the First-HD clinical trial is
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FDA Requests More Data on Potential New Treatment for Huntington Disease

Teva Pharmaceuticals Industries announced yesterday that the U.S. Food and Drug Administration (FDA) has asked for more data on SD-809 (deutetrabenazine), which is currently under review to treat Huntington disease (HD), a rare, inherited neurodegenerative disorder. The request for more data is common when the FDA is asked to approve new medications, and this is
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Teva Press Release: April 24, 2014

PRIDE-HD Study Enrolling Patients Globally to Further Evaluate Pridopidine for the Symptomatic Treatment of Huntington’s Disease – Study initiation represents significant milestone for patients with a disease with limited effective treatment options – JERUSALEM–(BUSINESS WIRE)–Apr. 24, 2014– Teva Pharmaceutical Industries Ltd. (NYSE: TEVA) announced today enrollment of the first patient in The Pride-HD study, a
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Teva & Active Biotech Press Release: November 4, 2014

Teva and Active Biotech Announce Expansion of Laquinimod Clinical Development Program with New Trial in Primary Progressive Multiple Sclerosis and First Patient Screened in Huntington’s Disease Trial 2014-11-04 ARPEGGIO and LEGATO-HD trials will further evaluate the effect of laquinimod in neurodegenerative diseases Jerusalem & Lund, Sweden – November 4, 2014 – Teva Pharmaceutical Industries Ltd.
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Auspex Press Release: December 16, 2014

Auspex Announces Positive Topline Results From Registration Trial of SD-809 for Chorea Associated With Huntington’s Disease Pivotal Phase 3 Trial Met Primary and Multiple Key Secondary Efficacy Endpoints; Favorable Safety and Tolerability Demonstrated ARC-HD Trial Shows Successful Maintenance of Chorea Control After Switch to SD-809 NDA Submission Planned by Mid-2015 Conference Call Scheduled for 4:30
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HSG Press Release: October, 2014

Announcement of CREST-E Early Study Closure October 2014 The National Center for Complementary and Alternative Medicine (NCCAM), part of the National Institutes of Health (NIH), has discontinued its study of creatine for treating the progressive functional decline that occurs in Huntington’s Disease (HD). The study, known as the Creatine Safety, Tolerability and Efficacy study (CREST-E), was being
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HSG Press Release: August 8, 2014

Announcement of 2CARE Early Study Closure August 2014  The National Institute of Neurological Disorders and Stroke (NINDS) stopped its study of coenzyme Q10 for the treatment of Huntington’s disease (HD) on July 14, 2014. The study (2CARE), conducted by the Huntington Study Group (HSG), was stopped for futility. The NINDS and the HSG acted on
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HSG Press Release: September 2012

2CARE (Coenzyme Q10 in Huntington’s Disease) Study Update September, 2012 Enrollment for the 2CARE study was closed on 25 July 2012, at which time the 609th participant joined the study. The study team has met the challenge of completing enrollment for the largest and longest clinical trial in Huntington disease (HD) to date. Forty-eight sites
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HSG Press Release: May 14, 2009

FOR IMMEDIATE RELEASE Huntington Study Group to Conduct Therapeutic Research Study in Pre-manifest Huntington’s Disease May 14, 2009 – Physicians at 10 clinical sites are taking part in a nationwide study investigating coenzyme Q10 in gene positive, premanifest Huntington’s disease. This study is known as PREQUEL (Study in PRE-manifest Huntington’s disease of coenzyme Q10 (UbiquinonE) Leading
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HSG Press Release: December 2, 2008

FOR IMMEDIATE RELEASE HSG Begins Phase IIb Study in Huntington Disease (HD) December 2, 2008 – The Huntington Study Group (HSG) is conducting a clinical trial in HD, “A multi-center, North American, randomized, double-blind, parallel group study comparing three doses of ACR16 versus placebo for the symptomatic treatment of Huntington disease” (HART) with the research
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