Huntington Study Group Launches Project AWARE 2.0 Observational Study

 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, and Ability for Research and Enrollment in clinical research.

HSG led Project AWARE 1.0 in collaboration with HSG members and advocacy partners in 2010, collecting the insights of over 600 individuals and families impacted by HD to identify awareness and common barriers to participating in clinical trials. As a result, Huntington Study Group developed novel methods to improve and elevate the quality of clinical trials by focusing on aspects of participation that were reported as most troublesome or misunderstood. Building on this success and the team’s experience with the changing clinical trial landscape over the past decade, Project AWARE 2.0 was launched to further explore the feelings, attitudes, and beliefs of HD family members, care partners, and others impacted by the disease regarding the communication and conduct of drug trials and observational studies.

“We know that learning from and listening to people impacted by Huntington’s disease is pivotal in unraveling the intricacies of research participation. Responses to this survey will provide invaluable information that will allow the HD research community to refine the design and execution of future trials and studies that will accelerate treatments for HD. We are proud to be working on this important study with Roche and extend our gratitude to those who are considering participating,” said Elise Kayson, MS, ANP, VP of Clinical Operations at HSG and the Study Principal Investigator.

Project AWARE 2.0 is now available on myHDstory®, HSG’s online direct-to-participant research platform that was developed in close collaboration with Neurotargeting, LLC, a team of physicians and engineers who specializes in developing innovative digital health solutions for neurodegenerative disorders.

Pierre-François D’Haese, PhD, CEO of Neurotargeting, said, “Our collaboration with HSG is not just a project; it’s a journey to develop innovative tools that reshape the research landscape. We have been working with HSG for years developing the myHDstory platform and are excited about working together to recognize the barriers to research participation and further advance the understanding of Huntington’s disease.”

Launched in 2022, myHDstory’s platform pilot study succeeded in having broader geographic and racial diversity reach than any other HD study and in engaging hundreds of people diagnosed with HD who had never participated in any trials or studies.

Participation in Project AWARE 2.0 is now open to individuals who live in the United States, are 18 years of age or older, and either have HD or are at risk for having HD. To learn more including how to enroll, please visit https://www.myhdstory.org/.

About Huntington Study Group
The Huntington Study Group®, a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., are world leaders in designing and conducting clinical trials through the world’s first and largest collaborative network with thousands of members at more than 130 HSG credentialed research sites worldwide. HSG conducted all three pivotal clinical trials that led to the only FDA-approved medications for Huntington’s disease associated chorea. The organization is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit  www.huntingtonstudygroup.org.

About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent. Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.

About Roche
Throughout their 125-year history, Roche has grown into one of the world’s largest biotech companies, as well as a leading provider of in-vitro diagnostics and a global supplier of transformative innovative solutions across major disease areas. Their commitment to their people, partners, stakeholders and, most importantly, their patients remains as strong as it was on the first day of their journey.

About Genentech, Member of the Roche Group
Genentech was founded in 1976, becoming a member of the Roche Group in 2009. Genentech is a leading biotechnology company dedicated to pursuing groundbreaking science to discover and develop medicines for people with serious and life-threatening diseases. Its transformational discoveries include the first targeted antibody for cancer and the first medicine for primary progressive multiple sclerosis.

About Neurotargeting, LLC
Neurotargeting specializes in developing innovative digital health solutions for neurodegenerative disorders. With a team comprising both physicians and engineers, we have designed a system that integrates seamlessly into clinical workflows, EHR, and PACS, providing a cohesive view of multiple data sources for enhanced patient outcome tracking and decision-making.

Huntington Study Group
Kristin Keyes
800-487-7671
https://huntingtonstudygroup.org
info@hsglimited.org

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New Study Reveals Evidence of an Ice-Rich Layered Deposit on Mars

New Paper Published by Smithsonian Scientist Tom Watters

WEBWIRE

Findings from a recently published paper led by Smithsonian senior scientist emeritus Thomas R. Watters reveal evidence that the deposits of the vast Medusae Fossae Formation (MFF) may contain a significant volume of water ice. The paper, Evidence of Ice-Rich Layered Deposits in the Medusae Fossae Formation of Mars, published in the journal Geophysical Research Letters Jan. 18, presents new radar sounder data that show the similarity between the MFF deposits and the ice-rich polar layered deposits at the north and south poles of Mars. Modeling of the compaction behavior of proposed ice-free geologic materials shows that none of them can account for the inferred electrical properties of the MFF deposits without pore-filling ice.

Finding evidence of layering in all the major units of the MFF makes a compelling case that the deposits are similar to the ice-rich polar layered deposits, Watters said. An ice-rich MFF deposit has important implications for the paleoclimate of Mars and could be potentially of great value to future human exploration of Mars. The MFF deposits are located at the Martian equator along the boundary between the northern lowlands and the heavily cratered highlandsan ideal landing spot for spacecraft as the lower elevation provides more atmosphere to slow a spacecrafts decent.

The MFF deposits remain one of the most enigmatic and least understood geologic units on Mars. Data from the Mars Advanced Radar for Subsurface and Ionospheric Sounding (MARSIS) instrument onboard European Space Agencys Mars Express spacecraft initially revealed that the electrical properties of the MFF deposits were very similar to ice-rich polar layered deposits. New MARSIS data shows that similarities go beyond the electrical properties. Detection of interior subsurface reflectors indicate the presence of pervasive layering like that found in both the North Polar Layered Deposits (NPLD) and the South Polar Layered Deposits (SPLD) that are known to be ice-rich.

The new MARSIS data also shows the MFF deposits reach a maximum thickness of 3.7 kilometers (about 2 miles)the maximum thickness of the SPLD. Compaction modeling of geologic materials proposed for the MFF deposits that include volcanic ash, windblown sediments and windblown rock dust shows that they cannot account for the inferred density and electrical properties of such a thick deposit.

Ice-rich MFF deposits, less a dry, insulating cover material possibly volcanic ash, represent a large reservoir of water in the equatorial zone of Mars. The estimated volume of water is up to 50% of that of the NPLD, much more than the total volume of water in the Great Lakes of North America. The volume of water is enough to cover the surface of Mars to a depth of about 1.5 to 3 meters (about 5 to 10 feet). The ice-rich MFF deposits were likely left at the Martian equator during periods of high obliquity when the present-day equator would have been much colder and the polar regions much warmer.

Watters is a senior scientist emeritus in the Center for Earth and Planetary Studies at the Smithsonians National Air and Space Museum and a member of the MARSIS science team.

The National Air and Space Museums Steven F. Udvar-Hazy Center is located in Chantilly, Virginia, near Washington Dulles International Airport, and is open daily from 10 a.m. to 5:30 p.m. Admission is free, but there is a $15 parking fee for vehicles entering before 4 p.m. at the Udvar-Hazy Center. The museum building on the National Mall in Washington, D.C., is located at Sixth Street and Independence Avenue S.W. and is open Thursday through Monday from 10 a.m. until 5:30 p.m. (closed Dec. 25). Admission is free, but timed-entry passes are required to visit the museums location in Washington.

Huntington Study Group and Roche Collaborate on GENERATION HD2 Study

 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 study. HSG is utilizing their long-standing history of expert recruitment, retention, and enrollment strategies to connect the HD community with participating sites.

Through this collaboration, and close work with HSG credentialed sites, HSG’s clinical operations services will advise Roche on the recruitment and enrollment needs of GENERATION HD2, a study being conducted by Roche-Genentech in 15 countries to evaluate the safety, biomarkers, and efficacy of tominersen compared with placebo in participants with prodromal and early manifest HD. Together with Roche, HSG will work to offer further opportunities to explore and incorporate strategies to successfully identify potential participants for the GENERATION HD2 study focused on the US sites.

Roche/Genentech Clinical Trial Lead, Peter McColgan said, “HSG’s established expertise in HD research including recruitment, enrollment, and retention were key factors in selecting them for this project. We have worked together in the past and look forward to this new endeavor that will allow us to collectively support our study sites, participants, and the HD community.”

HSG and Roche hosted a GENERATION HD2 Site Investigator and Coordinator Meeting on November 3, 2023, during the HSG 2023 Annual Meeting in Phoenix, AZ. Investigators and Coordinators came together to discuss clinical trial recruitment efforts, ideas and share feedback from HD patients to allow for their voices to be heard and address successes or barriers to recruitments.

Shari Kinel, CEO of Huntington Study Group noted, “This is a great opportunity for HSG and Roche to strengthen and grow our partnership, allowing us to collectively work toward accelerating treatments that make a difference to improve the lives of people impacted by Huntington’s disease.”

To learn more about the GENERATION HD2 study, visit the GENERATION HD2 Study.

If you’re interested in learning more about opportunities to collaborate with HSG, please contact info@hsglimited.org.

About Huntington’s Disease
Huntington’s disease (HD) is a progressive hereditary neurodegenerative disease characterized by movement disorders, psychiatric difficulties, and cognitive changes. HD symptoms usually present in middle adult life but can begin at any age. HD is a rare disorder — about 200,000 people worldwide have been diagnosed but many more are at risk for inheriting the disease from a parent. Huntington’s disease impacts people of all genders, races, and ethnicities. While symptomatic treatments are available, a cure for HD has not yet been discovered.

About Huntington Study Group / HSG Clinical Research, Inc.
The Huntington Study Group (HSG), a not-for-profit organization founded in 1993 in Rochester, NY, and its wholly owned subsidiary, HSG Clinical Research, Inc., designs and conducts clinical trials through the world’s first and largest collaborative network with thousands of members at more than 130 HSG credentialed research sites worldwide. HSG conducted all three pivotal clinical trials that led to the only FDA-approved medications for Huntington’s disease associated chorea. The organization is dedicated to improving the lives of people impacted by Huntington’s disease through research, education, and collaboration. For more information, visit www.huntingtonstudygroup.org.

About Roche
Throughout their 125-year history, Roche has grown into one of the world’s largest biotech companies, as well as a leading provider of in-vitro diagnostics and a global supplier of transformative innovative solutions across major disease areas. Their commitment to their people, partners, stakeholders and, most importantly, their patients remains as strong as it was on the first day of our journey.

About Genentech, Member of the Roche Group
Genentech was founded in 1976, becoming a member of the Roche Group in 2009. Genentech is a leading biotechnology company dedicated to pursuing groundbreaking science to discover and develop medicines for people with serious and life-threatening diseases. Its transformational discoveries include the first targeted antibody for cancer and the first medicine for primary progressive multiple sclerosis.

Huntington Study Group
Kristin Keyes
800-487-7671
https://huntingtonstudygroup.org

Contact

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Groundbreaking Study Reveals the Effectiveness of New RecoSMA Laser Treatment for Diabetic Foot

LINLINE MEDICAL SYSTEMS, based in Riga, Latvia, has demonstrated the remarkable effectiveness of its distinctive RecoSMA laser technology in treating chronic wounds. The recent study, “Spatially modulated erbium YAG laser as a treatment for diabetic ulcer”, published in the Journal of Wound Care (UK), was conducted using a MULTILINE laser system produced by the company.  

RecoSMA for Chronic Ulcers - Chronic ulcers treatment: a two-step approach
RecoSMA for Chronic Ulcers – Chronic ulcers treatment: a two-step approach

The study, conducted by a team of esteemed researchers, aimed to address the pressing issue of diabetic foot complications, which affect a substantial portion of the global population. According to the International Diabetes Federation, an alarming 463 million people are currently diagnosed with diabetes, projected to surge by 50% within the next three decades.

Diabetic foot ulcers are one of the most debilitating consequences of diabetes, often leading to severe complications, including amputations and significant financial burdens on patients and healthcare systems.

The dire reality is that individuals with diabetes face a 15-fold higher likelihood of undergoing lower extremity amputations than those without diabetes. Statistics indicate that, globally, a major amputation (above or below the knee) is performed on a person with diabetes every 20-30 seconds.

In this landmark study, researchers explored the use of a novel laser treatment for diabetic foot ulcers designed to revolutionize how we approach this chronic problem. By employing the spatially modulated high-power Erbium YAG (Er-YAG) laser technology, the team aimed to tackle diabetic foot ulcers in a two-step process that involved laser wound debridement and deep tissue biostimulation using the RecoSMA technology (implemented in “MULTILINE” laser system, produced by LINLINE MS).

The study included 59 patients with hard-to-heal diabetic foot ulcers and documented remarkable results.

The mean wound surface area at baseline was 25.7 cm2. The average number of laser treatment sessions required was 4.41, ranging from 1-11. The ulcers gradually reduced in size with each session, ultimately leading to complete wound closure in 100% of cases.

Laser treatment made it possible to clear wounds of necrotic tissue and microbial bioburden without damaging viable tissue. The procedures were painless on an outpatient basis.

The RecoSMA laser operates by activating the body’s innate healing processes, fostering neovascularization, and expediting tissue regeneration. This mechanism facilitates wound healing through re-epithelialization originating from the wound’s edges and granulation emerging from the wound bed’s depths, all without the formation of fibrosis. This unique approach promotes scar-free and unimpeded wound healing, a pivotal factor in effective rehabilitation.

The impact of this research is profound. It suggests a potential paradigm shift in the way we approach diabetic foot ulcers, offering a beacon of hope for those affected by this debilitating condition. By harnessing the power of innovative laser therapy, we have the opportunity to enhance the quality of life for individuals suffering from diabetic foot complications and to reduce the economic strain on healthcare systems.

For more details about the technology, please visit the website:

https://www.non-healing-wound.care/

The link to the study: https://doi.org/10.12968/jowc.2023.32.Sup10a.S21

About us: LINLINE Medical Systems SIA (Riga, Latvia) is a world-leading company specialising in developing and manufacturing advanced medical lasers designed to treat various conditions in surgery, endoscopy, dermatology, gynaecology, wound healing and aesthetic medicine.

Company’s website: https://linline-ms.com/.

Contact Information
Alex Troshkin, Co-founder, board member, at@linline-ms.com, +37122453227

Related Files
chilgar-andurkar-2023-spatially-modulated-erbium-yag-laser-as-a-treatment-for-diabetic-ulcer (1).pdf


Topic: Press release summary

New Study Shows Threat to Philippine Consumers From Piracy Sites Remains Greater Than Ever

The Asia Video Industry Association (AVIA), with Dr Paul Watters of Cyberstronomy, have released a new report, “Consumer Risks from Piracy in the Philippines”, that once again highlights the possible dangers Filipino consumers face when accessing pirate sites.
The report found that Filipino consumers visiting pirate streaming sites are 21.66 times more likely to be infected with malware compared to mainstream sites (with a verifiable detection rate of 10%(1)). When visiting pirate torrent sites, Filipino consumers are 16.66 times more likely than mainstream sites to be infected with malware (with a verifiable infection rate of 18%). Those consumers impacted can be infected with some of the most serious malware types, such as trojan horses that could be used for lateral movement and remote access by sophisticated attackers.

The “Consumer Risks from Piracy in the Philippines” report builds off a 2022 report by Cyberstronomy, “Time to Compromise”, which looked at malware risks in Asia-Pacific and found that a typical user visiting a pirate site could be infected by ransomware, several trojan horses, and other Advanced Persistent Threats (APTs) within 42 seconds on a Windows machine and within 1 minute and 18 seconds on an Android device. The results of the 2022 report supported the hypothesis that there is a nexus between piracy and malware infections, where site operators generate significant revenue from allowing malicious ads to be placed on their sites. Malware can in turn gain access to consumer PCs and mobile devices, and all of the data held in storage, but also access to banking login details and other sensitive logins(2).

Matt Cheetham, General Manager of CAP, noted, “Evidence continues to mount that far from being a victimless crime, piracy can victimize consumers.” Cheetham also noted that it is more timely than ever that the site blocking legislation recently introduced into the Senate by Senators Estrada and Villar passes quickly. “We look forward to the successful passage of site blocking legislation in the Senate that will allow the Philippines to both protect its consumers from online harm posed by pirate sites and grow its economy,” said Cheetham.

(1) In addition to the relative risk calculations, researchers verified that 10% of visits to pirate streaming sites resulted in malware infection.
(2] Some malware infetions are also relatively benign for consumers, and during any particular sampling period the malware detection rate and relative risk may fluctuate due to random variation.

About the Asia Video Industry Association

The Asia Video Industry Association (AVIA) is the trade association for the video industry and ecosystem in Asia Pacific. It serves to make the video industry stronger and healthier through promoting the common interests of its members. AVIA is the interlocutor for the industry with governments across the region, leads the fight against video piracy through its Coalition Against Piracy (CAP) and provides insight into the video industry through reports and conferences aimed to support a vibrant video industry.

Researcher Biography
Professor Paul A. Watters is Honorary Professor in Criminology and Security Studies at Macquarie University, Adjunct Professor of Cybersecurity at La Trobe University, and CEO of Cyberstronomy Pty Ltd, a Melbourne-based startup that develops Governance, Risk and Compliance software for cybersecurity. Professor Watters is a Fellow of the British Computer Society and Chartered IT Professional, a Senior Member of the IEEE, and a Member of the Australian Psychological Society. Professor Watters has published more than 200 peer-reviewed research papers in cybersecurity, data mining, and cognate fields, which have been cited more than 4,832 times by his peers. He is consistently in the top 10% of all researchers by paper downloads on the Social Sciences Research Network (SSRN).

For media enquiries and additional background please contact:
Charmaine Kwan
Head of Marketing and Communications
Email: charmaine@avia.org
Website: www.avia.org
LinkedIn: www.linkedin.com/company/asiavideoia
Twitter: @AsiaVideoIA


Topic: Press release summary