Anosmia

More than a third of people who self-identify as having a smell disorder have had at least one gas safety scare in the last five years, according to new research. More than a third of people who self-identify as having a smell disorder have had at least one gas safety scare in the last five years, according to new research. The study, led by the University of East Anglia (UEA) in collaboration with the charity Fifth Sense, asked people who cannot smell well what safety concerns they had and if they had experienced any hazardous events. A total of 432 people responded to the online survey, which was conducted from February 25 to September 28, 2022, and distributed via the charity. It revealed that a significant majority of participants (85.9pc) are concerned about safety, particularly regarding gas leaks, smoke, and spoiled food. The study highlights that over five years, a substantial number of respondents encountered hazardous events related to their condition, emphasising the impact of smell loss on personal safety and emotional wellbeing. During the previous five years, 32.2pc of respondents had experienced a safety concern related to food, 14.8pc a gas incident in which someone was hurt, 34.5pc a gas scare and 18.5pc a safety incident at work. Lead researcher Dr Liam Lee said: "This study underscores the critical importance of addressing safety concerns for individuals with olfactory dysfunction. "The findings show that smell loss significantly affects personal safety and emotional wellbeing. But we can help by finding ways to make things safer for them. "We could teach people about the risks and make tools like 'scratch and sniff' cards1 to help them recognise dangerous smells." Before 2020, more than three million people in the UK (5pc of the population) were estimated to be affected by smell loss. Now around a further one million people are also thought to have persistent problems following a Covid-19 infection. Some people lose their sense of smell completely (anosmia). Others may experience a reduced sense of smell (hyposmia), unpleasant distorted smells (parosmia) or smell hallucinations (phantosmia). These changes may be accompanied by loss of or changes to the sense of taste. A total of 95 people who responded to the survey (22pc) reported a Covid-19 infection as the cause of their olfactory dysfunction. Co-author Professor Carl Philpott, of UEA's Norwich Medical School, said: "While most respondents reported not experiencing any adverse events, it's noteworthy that among those without any gas-related incidents, a common reason cited was the deliberate avoidance of living in environments with gas installations due to fear and anxiety of potential accidents." Prof Philpott helped to found Fifth Sense with Duncan Boak, who is chief executive of the charity which supports people affected by smell and taste disorders. Mr Boak said: "This research highlights an important, yet unrecognised, public health issue with serious safety implications. "Yet there are a lack of treatment options for these sensory impairments and only a handful of specialist smell and taste clinics in England, with none in Scotland, Wales or Northern Ireland. "Another issue is that we don't routinely test the sense of smell which means that these problems often get missed with people not getting the care they need, or support and information to help them stay safe at home. "I hope that our research serves as a prompt for policymakers and the NHS to start working with us to address what is a major health inequality." In 2016, Hannah Martin experienced a gas scare that could have had serious consequences. The 32-year-old, who works in financial services and lives in Littlehampton, lost her sense of smell after a viral infection when she was 18. However, she felt comfortable using all her family's gas appliances as she had always cooked with her mum from when she was very young. She said: "This particular evening I was preparing dinner for my mum and I, I ensured the eye-level grill had lit and then turned my back in order to prepare the next part of the meal. "I'm unsure how much time passed but all of a sudden, my mum came running down the stairs and yelled 'don't touch anything that may cause an ignition, I can smell gas all the way on the next floor up'." When they checked they found the grill had gone out and Hannah had no idea, even though she had been in the kitchen the entire time. Hannah said: "I felt horrified when this happened as if I had managed to blow up the kitchen, we have a household of five people on each side of us and there would've been no way to warn them at the time. The thought of injuring all those innocent people absolutely terrified me. "The incident made me lose confidence in myself as from then on I always had to make sure that there was somebody in the kitchen with me if I planned to use any of our gas appliances to prevent it from happening again." The scare led to her family finding the Fifth Sense charity, whose safety information they followed diligently, such as ordering detectors to keep Hannah and everyone in the household safe. It helped her to regain her confidence in the kitchen and be able to cook independently again. She said: "It has majorly impacted my mental health and Fifth Sense's safety information has literally saved my life. My quality of life would not be what it is without the work that Duncan and his team do. My only regret is that I didn't find them sooner." Fifth Sense is working in partnership with Cadent, the UK's largest gas distribution network, to highlight this issue and ensure that people with a poor, altered or no sense of smell have the information and support they need to stay safe and well at home. Mark Belmega, Director of Social Purpose and Sustainability at Cadent, said: "It's really important that we help keep those with anosmia and other smell disorders, safe around gas. "We know cases have increased following the Covid-19 pandemic and so we're proud to work in collaboration with Fifth Sense to amplify key gas safety tips, including regularly servicing gas appliances, joining the Priority Services Register and getting gas and CO detectors fitted at home." The researchers noted a limitation of the study was that the data was self-reported and there could also be a sampling bias of charity members who are already seeking support.

New paper in The Lancet Neurology proposes the first iteration of a research framework for defining and staging Parkinson's disease (PD) based on biology, rather than clinical symptoms The framework defines PD based on the neuronal alpha-synuclein pathology that is a hallmark for the disease, building on the 2023 discovery of a biomarker that detects alpha-synuclein in living people Based on this new definition, the paper's authors propose a staging system — the neuronal alpha-synuclein disease integrated staging system (NSD-ISS) — that promises to be a research accelerator by improving the development of new drugs across the disease continuum, enabling clinical trials for disease prevention and clarifying regulatory review NEW YORK, Jan. 23, 2024 /PRNewswire/ -- Today, an international working group has proposed a new research framework — the neuronal alpha-synuclein disease integrated staging system (NSD-ISS) —that, for the first time, stages Parkinson's disease (PD) and defines it based on the disease's underlying biology. The paper, published in The Lancet Neurology, describes the framework, its applications, gaps in knowledge and future plans. The NSD-ISS framework is considered a milestone for the field, and a critical starting point — as more data is developed, its concepts and definitions are expected to evolve. The foundation of NSD-ISS defines Parkinson's by the presence of its hallmark pathology, neuronal alpha-synuclein (asyn), that can now be detected by reliable biomarkers, often before symptoms appear. By applying an objective approach to detecting PD and standardizing its tracking on a biological continuum, NSD-ISS represents a major leap into the new and emerging biological era of Parkinson's science. The new research framework stands to accelerate and increase the success of scientific discovery and therapeutic development at all stages of Parkinson's. And ultimately, a treatment that targets the biology of the disease — rather than just its symptoms — is the way to reach a cure. (A similar biological framework in Alzheimer's disease resulted in successful trials and new drug approvals, with the first drugs to slow Alzheimer's-related cognitive decline appearing in 2022 and 2023.) This landmark step forward was made possible by the breakthrough discovery of a test — validated in April 2023 by The Michael J. Fox Foundation's Parkinson's Progression Markers Initiative — capable of detecting the earliest believed pathology of PD even prior to the onset of any visible symptoms. The test, known as the alpha-synuclein seed amplification assay (αSyn-SAA), detects dysfunctional alpha-synuclein protein, one of the two biological hallmarks of PD alongside dopaminergic transport dysfunction, which can be visualized later in the disease process in the brain using DaTScan. Together, these two hallmarks serve as the basis for the NSD-ISS staging system. Key details include: The NSD-ISS integrates two core biomarkers: aggregated asyn (as currently detected by αSyn-SAA) and dopamine dysfunction (as currently measured by DaTScan dopamine transporter imaging in the brain). Stages one and two are based on these objective biomarkers, and stages three to six require these biomarkers and progressive motor and other nonmotor symptoms, such as REM sleep-behavior disorder, tremor, severe loss of smell, cognitive impairments and gait and balance problems. While disease occurs on a continuum and progression varies from person to person, defining discrete biological stages is critical to provide an objective framework for therapeutic development. Researchers are still investigating and refining the timeline for biological disease progression. "This new research framework promises to transform clinical trial design as we know it," said Diane Stephenson, PhD, executive director, Critical Path for Parkinson's Consortium, Critical Path Institute, and a coauthor on The Lancet Neurology paper. "This is how the field will meaningfully and tangibly achieve smarter and faster drug trials and treatments that can slow or halt disease progression, and perhaps one day, prevent the disease process from occurring altogether." Because the framework encompasses clinical syndromes for which dysfunctional asyn is the defining biological hallmark, it applies to — and stands to improve treatment for — both PD and dementia with Lewy Bodies (DLB). The NSD-ISS unifies PD and DLB along the same continuum of progression based on a standardized biological diagnosis. Framework Developed through Open Multistakeholder Collaboration There is widespread recognition that to achieve a paradigm shift in how PD is defined and staged, multiple diverse stakeholders need to come together and engage in open and transparent dialogue. As part of the effort, the framework's international working group hosted a multistakeholder discussion to collect input on the concepts for NSD-ISS from people and families living with PD, neuroscience and clinical leaders, industry experts, federal research funders (i.e., the National Institutes of Health), disease-focused nonprofit organizations and regulatory authorities (i.e., the Food and Drug Administration). A draft manuscript also was posted online for public comment. The process — which engaged more than 550 individuals and organizations from six continents — resulted in a framework informed by collective community input. "Inviting scientific discourse from a multitude of perspectives is a key principle and a shared value of every organization and individual in the working group effort," said Sohini Chowdhury, The Michael J. Fox Foundation's chief program officer and a coauthor on the paper. "This new research framework is the product of a diverse community of contributors, whose inputs have helped to align and harmonize this first meaningful step toward a shared tool for researchers and the biopharma industry." NSD-ISS Will Become a Research Accelerator for the Field The first iteration of the NSD-ISS framework is expected to play a transformative role in guiding development of therapies that affect disease progression by: Stimulating new approaches to develop and test therapies targeting relevant biology across the disease continuum, which could lead to precision treatments for people at every stage of disease. Enabling clinical trials even prior to symptom onset though biomarker-based disease detection. These trials could ultimately lead to therapies that prevent the onset of clinical symptoms. Providing academic researchers, industry investigators and regulators a consistent and uniform definition for each disease stage so that molecular investigations and clinical trial outcomes can be objectively assessed, standardized and compared efficiently. "Our shared hope is that this new framework will foster innovation in clinical development, making trials more efficient and streamlining regulatory review. In short, the NSD-ISS is a research accelerator. And it is expected to evolve with accumulating scientific knowledge," said Tanya Simuni, MD, lead author on the paper, professor of neurology and director of the Parkinson's Disease Movement Disorders Center at Northwestern University. "The success that the Alzheimer's field has had with its biological framework provides the inspiration and motivation to achieve similar accelerated timelines in Parkinson's. Ten years from now, we hope we will look back and say this framework was the key that finally opened the door to next-generation treatments in Parkinson's." As Simuni and her coauthors note in The Lancet Neurology paper, the framework offers an actionable proposal to researchers and industry creating a new path for efficient clinical trials, but at present, it is not intended for use in routine clinical care. The paper includes acknowledgement that data supporting concepts of the NSD-ISS framework have emerged largely from the Foundation's landmark PPMI study. Major funding for PPMI comes from Aligning Science Across Parkinson's (ASAP) (), a coordinated research initiative focused on accelerating the pace of discovery and informing the path to a cure for PD. ASAP support is enabling a seismic expansion of PPMI to increase recruitment efforts and remote testing for those at-risk for PD as well as expanding assay development efforts to enable breakthroughs such as the alpha-synuclein seed amplification assay. PPMI is additionally funded by a consortium of more than 40 biotech and pharmaceutical firms providing financial and in-kind support, and by tens of thousands of individual donors to The Michael J. Fox Foundation. Heralded as "the study that's changing everything" about how Parkinson's is diagnosed, managed and treated, PPMI and its data are made possible by the more than 2,000 in-clinic and 40,000 online research volunteers with and without Parkinson's disease. "It's still early, but this framework will have an immediate impact in terms of how we're designing clinical protocols and optimizing research that can lead to better treatments that patients are waiting for," said Peter DiBiaso, MHSA, a coauthor on the paper, a drug development professional, and member of MJFF's Patient Council who was diagnosed with PD at 49. "We know there's a lot of work to be done, but this is the most important first step the field can take together to rapidly advance breakthroughs for patients and families." About The Michael J. Fox Foundation for Parkinson's Research (MJFF) As the world's largest nonprofit funder of Parkinson's research, The Michael J. Fox Foundation is dedicated to accelerating a cure for Parkinson's disease and improved therapies for those living with the condition today. The Foundation pursues its goals through an aggressively funded, highly targeted research program coupled with active global engagement of scientists, Parkinson's patients, business leaders, clinical trial participants, donors and volunteers. In addition to funding $1.75 billion in research to date, the Foundation has fundamentally altered the trajectory of progress toward a cure. Operating at the hub of worldwide Parkinson's research, the Foundation forges groundbreaking collaborations with industry leaders, academic scientists and government research funders; creates a robust open-access data set and biosample library to speed scientific breakthroughs and treatment with its landmark clinical study, PPMI; increases the flow of participants into Parkinson's disease clinical trials with its online tool, Fox Trial Finder; promotes Parkinson's awareness through high-profile advocacy, events and outreach; and coordinates the grassroots involvement of thousands of Team Fox members around the world. For more information, visit us at , Facebook or Twitter. SOURCE The Michael J. Fox Foundation for Parkinson's Research

An exhalation delivery system that uses a patient's own breath to carry the anti-inflammatory compound fluticasone (EDS-FLU) directly to the sinuses reduced chronic sinus infection (sinusitis) symptoms and decreased aggravations and infections associated with chronic inflammation of the sinus by more than 50 percent, researchers reported. An exhalation delivery system that uses a patient's own breath to carry the anti-inflammatory compound fluticasone (EDS-FLU) directly to the sinuses reduced chronic sinus infection (sinusitis) symptoms and decreased aggravations and infections associated with chronic inflammation of the sinus by more than 50 percent, researchers from the Perelman School of Medicine at the University of Pennsylvania reported. The randomized, international clinical trials (NCT03781804 and NCT03960580), published today in The Journal of Allergy and Clinical Immunology: In Practice, compared EDS-FLU to a placebo in more than 500 adults with chronic rhinosinusitis with or without nasal polyps. Patients used either EDS-FLU or a placebo twice daily for 24 weeks. EDS-FLU works through a patient exhaling into the device to send the medication deep into the far reaches of their sinus cavities, where the topical medication is most effective. Compared to a placebo, sinus symptom scores and CT scan results were significantly improved. Symptoms of nasal congestion, nasal discharge, facial pain/pressure, and loss of smell improved dramatically with EDS-FLU compared to placebo, as measured by the sinonasal outcome test-22, a standardized scoring measure for sinonasal symptoms. "Chronic sinusitis affects as much of 10 percent of the United States population, and can make breathing uncomfortable and negatively impact a person's daily life," said lead author James N. Palmer, MD, the David W. Kennedy, MD Endowed Professor of Otorhinolaryngology and director of Rhinology at Penn Medicine. "These findings provide strong evidence for an effective, non-invasive treatment option for people who continue to experience symptoms after over-the-counter medications have failed." Millions of Americans experience the symptoms of chronic sinus infections and inflammation, a largely inflammatory condition that causes nasal congestion, sinus pressure, and pain, when the sinus membranes are inflamed for long periods of time. Although over-the-counter nasal sprays offer marginal relief, no FDA-approved medication exists for the most common form of the condition, chronic rhinosinusitis without nasal polyps, known as "chronic sinusitis." While some nasal sprays may offer some symptom relief, patients who were using a standard-delivery nasal spray before study enrollment still reported similar improvements in symptoms compared to others in the study. These are the first placebo-controlled clinical trials to show that a medication reduces subjective symptoms and objective measures of sinus disease for patients with chronic sinusitis, both with and without polyps. Currently, patients whose symptoms are not resolved by over-the-counter nasal sprays or other medications, have limited options for relief, including antibiotics, surgery, or -- for patients with nasal polyps -- lifelong biologic therapies. EDS-FLU was determined to be as safe as standard over the counter nasal sprays. The study was funded by OptiNose US, Inc., and the company has submitted a new drug application to the FDA for EDS-FLU for chronic rhinosinusitis without nasal polyps based on these study results. Note: Palmer chaired the steering committee for the studies, serves a consultant for OptiNose, and holds Optinose stock.