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People with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) spend time less asleep and wake up often during the night, a new analysis shows.
Because good sleep is critical for quality of life, the findings emphasize the importance of testing sleep quality in ALS so appropriate treatments can be given if needed, the researchers said in &#8220;<a href="https://doi.org/10.1016/j.sleep.2023.04.014">Sleep in amyotrophic lateral sclerosis: A systematic review and meta-analysis of polysomnographic findings</a>,&#8221; which was published in <a href="https://www.elsevier.com/locate/sleep">Sleep Medicine</a>.
Trouble with sleep is commonly reported with ALS and some studies suggest patients usually have abnormalities on polysomnography (PSG), which is the gold standard for objectively measuring sleep quality and quantity. It&#8217;s unclear exactly what sorts of changes in PSG are most common in ALS, however, leading scientists in China and the U.S. to conduct a meta-analysis to better characterize ALS-related PSG changes. Meta-analysis is a type of study where researchers pool data from multiple previously published studies then analyze them collectively. By including data from many studies, meta-analyses provide greater statistical power toward detecting meaningful differences.
&#8220;To our knowledge, this is the first meta-analysis exploring the PSG changes in ALS patients compared with healthy controls,&#8221; the researchers wrote about the analysis, which included data from eight studies, covering about 300 people with ALS and a similar number of people without the disease. Most of the studies (7 of 8) were published after 2012.
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<h3>Analyzing sleep problems in ALS</h3>
While all the studies used PSG to compare people with and without ALS, there were some important differences in methods used in them. Some didn&#8217;t include patients on medications known to affect sleep, but others did, and different studies used different standardized scores to measure sleep quality.
In an initial analysis, the researchers found many PSG parameters significantly were altered in ALS. For example, on average, patients spent significantly less time asleep and had less time in slow-wave stages that feature more restful, deeper sleep.
&#8220;The TST [total sleep time] of ALS patients is nearly 80 [minutes] less compared with controls in our meta-analysis,&#8221; the scientists wrote.
Patients also tended to have worse scores related to breathing and taking up oxygen during sleep. They also spent more time awake after going to bed and had poorer sleep effectiveness. These differences generally remained statistically significant when sensitivity analyses were performed to account for study-to-study variations in age, sex, and body mass index (a ratio of weight to height).
The scientists speculated that neurological changes in ALS, as well as <a href="https://alsnewstoday.com/symptoms-of-als/">disease symptoms</a> such as issues with breathing, might explain some changes. More research is needed to investigate the underlying mechanisms, they said.
People with ALS also tended to spend less time in REM (rapid eye movement) sleep, which is when dreaming occurs, initial analyses suggested. This difference was no longer significant after statistical adjustments, however, meaning it&#8217;s mathematically plausible it could be explained by random chance.
Because REM sleep is critical for maintaining brain health, the researchers said larger studies should investigate if there&#8217;s a meaningful difference in REM sleep time with ALS.
In further sensitivity analyses, the researchers analyzed only studies that didn&#8217;t exclude participants taking medications known to affect sleep. Some of the ALS-related differences, such as more time spent awake and worse sleep efficacy, were more pronounced than in the original analysis with all eight studies. Differences also were more dramatic when only studies that used the same scoring system to assess sleep quality were analyzed.
&#8220;In the sensitivity analysis, we found that not excluding patients taking medications impacting sleep and different PSG scoring rules could impact differences in PSG findings between ALS patients and controls,&#8221; the scientists wrote, adding the findings imply that &#8220;taking sleep medications masks the true impact of ALS.&#8221; This will be an important consideration for future research, they said.

Sleep problems are common among ALS patients: Meta-analysis

Applications are open for the first year of the ALS Canada Kevin Daly Bursary, a grant program for post-secondary students whose lives have been touched by <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS).
A $2,500 bursary will be awarded to a Canadian student who&#8217;s been accepted into a college or university in Canada for the 2023-2024 term. Eligible students must have a parent or legal guardian who either <a href="https://alsnewstoday.com/living-with-als/">lives with ALS</a> or has passed away from disease complications. The deadline to apply is June 20.
<a href="https://als.ca/support-services/national/bursaries-awards/">Applications</a> will be reviewed by a panel selected by the <a href="https://als.ca/">ALS Society of Canada</a> (ALS Canada), which will include ALS community members, and a recipient will be named before the academic year starts in September.
Funding for the bursary is expected to be raised during a year-long campaign by the <a href="https://www.kevindalybursary.com/">Kevin Daly Bursary Fund</a>, with donations matched by the ALS Society and the TELUS Team Care program in Canada. Each year, at least one $2,500 bursary will be awarded. This year&#8217;s goal is to seed the fund with at least $15,000 in donations.
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<h3>&#8216;Supporting the ALS community&#8217;</h3>
The fund was created this year in honor of Daly, a father and husband who was diagnosed with ALS in 2020. Daly worked at TELUS for more than 20 years and has been advocating for the ALS community since his <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>.
&#8220;The ALS Canada Kevin Daly Bursary is a testament to Kevin&#8217;s courage and dedication to supporting the ALS community,&#8221; Tammy Moore, CEO, ALS Society of Canada, said in a <a href="https://www.globenewswire.com/news-release/2023/05/16/2669987/0/en/Applications-open-for-ALS-Canada-Kevin-Daly-Bursary-in-support-of-Canadian-students-touched-by-ALS.html">press release</a> from the organization. &#8220;ALS is a devastating disease that impacts the individual and their loved ones, including children. This can make planning for the future challenging. Through this program, we hope to lighten some of the weight carried by families who have been touched by ALS. We are so grateful for Kevin&#8217;s unwavering commitment to uplifting families within the ALS community.&#8221;
Founded in 1977, the ALS Society of Canada funds research and supports and advocates for those with the progressive neurodegenerative disorder.
&#8220;Since being diagnosed with ALS and seeing how this disease affects an entire family, having two daughters of my own, it was important to me that the Bursary support young people in reaching their goals and pursuing their dreams,&#8221; Daly said. &#8220;Our mission is to help make higher education accessible so everyone can have an opportunity to thrive.&#8221;

Kevin Daly college bursary program opens in Canada to help ALS families

The <a href="https://www.als.org/">ALS Association</a> and the <a href="https://www.theaftd.org/">Association for Frontotemporal Degeneration</a> (AFTD) have opened a global grant program to accelerate the development of digital assessment tools for <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) and frontotemporal dementia (FTD), a related condition.
The <a href="https://www.theaftd.org/for-researchers/funding-opportunities/digital-assessment-tools-for-ftd-and-als-awards/">Digital Assessment Tools for FTD and ALS Awards</a>, backed by a $500,000 ALS Association Partnership Grant, will provide researchers with $750,000 to help develop assessment tools for the neurodegenerative disorders. From two to four grants will be funded over two years.
The tools must utilize wearable trackers, smartphones, or other devices to remotely collect data on a patient&#8217;s symptoms or ability to function. Such assessment tools could remove some of the barriers that prevent ALS and FTD patients from participating in research, which could improve care for both diseases.
&#8220;Carefully developed digital tools can help people living with a diagnosis of ALS, FTD, or ALS-FTD to participate in research more easily and more frequently, and from the comfort of their own homes,&#8221; Penny Dacks, PhD, AFTD&#8217;s senior director of scientific initiatives, said in a <a href="https://www.prnewswire.com/news-releases/aftd-and-als-association-launch-funding-opportunity-for-digital-tool-development-in-als-and-frontotemporal-dementia-301822641.html">press release</a>. &#8220;Because digital tools allow for remote participation from those who may not have the means to travel to sites due to cost or distance, the data is more likely to represent the people living with these diseases.&#8221;
The awards are open to scientists at academic or nonprofit research institutions, as well as for-profit organizations such as digital technology developers and biotechnology companies, although other types of organizations may qualify. Academia and industry partnerships are encouraged to apply. Applications must include proof of research expertise in both ALS and FTD.
Depending on a project&#8217;s scope and development stage, budget requests can be between $150,000 and $400,000. Grant applications at nonprofit or academic institutions may request up to 10% of their budget to cover indirect costs. The <a href="https://www.theaftd.org/wp-content/uploads/2023/05/AFTD-ALSAssn-Digital-Assessment-Tools-RFP.pdf">application</a> deadline is July 14. The funding period will start Jan. 1, 2024, and end Dec. 31, 2026.
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<h3>The case for shared ALS, FTD research</h3>
ALS is marked by the loss of motor neurons — the nerve cells that control voluntary movement — leading muscles to shrink and weaken. FTD is a group of neurological disorders that impact the brain&#8217;s frontal and temporal lobes, areas typically associated with behavior, personality, and language.
Both diseases share common underlying processes that promote disease development, namely the abnormal accumulation of the protein TDP-43. In healthy cells, this protein enters the nucleus and binds DNA and RNA to mediate protein production. In ALS and FTD, though, the protein is abnormally shaped and tends to accumulate in the cytoplasm, where it forms protein clumps that are toxic to cells.
ALS and FTD symptoms can overlap. For example, ALS patients can have language and behavioral issues that are common in FTD, while people with FTD can have movement problems such as those exhibited in ALS.
&#8220;Despite being intertwined biologically, research into ALS and FTD has traditionally been conducted in silos. This partnership and collaborative funding will help bridge the divide, bringing together researchers with interests spanning the continuum of these two diseases,&#8221; said Kuldip Dave, PhD, senior vice president for research at the ALS Association. &#8220;Together, we can achieve much more than we could on our own.&#8221;
Research into both diseases is hamstrung by the severely limited pool of prospective participants with the time and means to travel to a study site. Also, clinical centers that provide ALS care and conduct disease research are typically separate from those for FTD patients. Digital assessment tools could surmount such barriers.
Dacks said it&#8217;s time to focus on the disorders&#8217; commonalities to help both patient communities.
&#8220;AFTD is proud to partner with The ALS Association to foster collaboration across the FTD and ALS research communities. This program will advance digital tool development at the intersection of these two worlds, helping to create tools that can meet the families that are often living in the middle,&#8221; she said.

Tag: Amytrophic Lateral Sclerosis

Sleep problems are common among ALS patients: Meta-analysis

Kevin Daly college bursary program opens in Canada to help ALS families

Improving ALS, FTD research is aim of digital tool grant program