From the Stacks
There are literally thousands of journals published around the world that relate to the disability community. It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk.
Cognitive decline is often linked to hearing loss: This may be why
James McIntosh
Medical News Today ⎸ February 16, 2026
Hearing loss may be a sign of declining brain health, but the question is: Why?
A new study finds an association between hearing loss and cognitive decline via shared changes in the brain.
Structural atrophy and functional decline coupled together in specific areas of the brain correlated with both ‘worsening hearing thresholds and cognitive impairment. ‘
The study authors propose the ‘Functional-Structural Ratio’ or FSR as a way to measure these coupled changes, which could potentially become a tool for assessing dementia risk in people with age-related hearing loss.
Researchers believe that they have identified a biological “bridge” between age-related hearing loss and cognitive decline.
While scientists have previously been aware of a link between hearing and the risk of cognitive decline, there has been uncertainty around what mechanisms might be behind it.
The new study, published in eNeuro, takes a step toward understanding after examining the brains of people with presbycusis, a form of age-related hearing loss.
Presbycusis is the most common cause of hearing loss worldwide and affects an estimated two-thirds of Americans aged 70 and above.
It affects both ears and is marked by a reduced ability to understand parts of speech that involve high frequencies: Voiceless consonant sounds that we make without use of our vocal cords like “ch,” “f,” and “p.”
Previous studies have examined connections between hearing loss and changes in the structure of the brain as well as how the brain is functioning. They have noted these structural and functional changes in people with presbycusis have a close association with cognitive decline.
However, when it comes to this form of hearing loss, researchers have not fully investigated the combination of these functional and structural changes together, which is where this new study comes in.
What did the researchers measure?
The study set out to compare 55 participants with presbycusis with 55 control participants. All participants were aged between 50 and 74 years.
Among the participants with presbycusis, 35 had mild hearing loss, 19 had moderate hearing loss, and 1 had severe hearing loss.
The researchers used magnetic resonance imaging (MRI) to examine the brains of the participants. They also got the participants to complete tests to assess their hearing as well as their cognitive functioning.
As the aim of the study was to investigate the effects of the relationship between brain structure and function, the researchers devised a measurement called functional-structural ratio (FSR) in the following way:
they used a measurement of brain activity called amplitude of low-frequency fluctuations (ALFF) to assess how the brain was functioning in a particular area
they looked at the volume of gray matter to assess the structure of the brain in a particular area
They calculated the FSR by dividing the average ALFF signal by the average gray matter volume.
Hearing loss and cognitive decline: What happens in the brain?
Among the people with presbycusis, the researchers found that worse performances in the hearing loss and speech recognition tests were associated with lower FSR scores in certain parts of the brain.
FSR reduction in the same brain areas was also associated with lower scores in a number of cognitive tests, including those assessing audio-verbal learning and decision-making.
These parts of the brain were:
the putamen and fusiform gyrus, which play a role in processing sounds
the precuneus and medial superior frontal gyrus, which play a role in decision-making and memory.
“Crucially, reduced FSR correlates with both worsening hearing thresholds and cognitive impairment,” wrote the authors. “This highlights FSR as a key neurobiological link between hearing loss and cognitive decline.”
How cognitive problems and hearing loss are linked
The authors believe that this study is the first to analyze the coupling of functional and structural changes in specific regions of the brain for people with presbycusis.
“This provides the first direct neurobiological evidence linking hearing loss to cognitive decline via shared neural reorganization,” they wrote.
As the study looked at the participants’ brains at a specific moment in time, the authors are unable to determine whether it is pre-existing changes in the brain that lead to hearing loss or if it is the loss of hearing that leads to changes in how the brain is structured and functions.
The authors now aim to validate their findings through further studies, but in the meantime they believe that their research could have future implications for patient care.
“The most important takeaway is that preserving hearing health may protect brain integrity,” said Ning Li, one of the study authors based in Shandong Provincial Hospital, China, in a press release.
“Because changes in the FSR correlate with both hearing loss and cognitive decline, this ratio could eventually serve as a biomarker—a tool for doctors to identify who is at the highest risk for dementia simply by looking at their brain scans,” Li added.
Medical News Today spoke with Steve Allder, MD, a consultant neurologist at Re:Cognition Health in London in the United Kingdom, who was not involved with the study. Allder told us that a new biomarker here could be highly valuable.
“It would allow early detection of at-risk individuals before symptoms appear, guide personalized interventions, and improve understanding of how sensory decline contributes to dementia. Such a marker could also track progression or treatment response, making dementia care more proactive.”
“When we treat patients’ hearing loss with hearing aids or cochlear implants (depending on the severity of hearing loss), cognition increases and social isolation and depression decrease,” she said.
On the other hand, she added, “untreated hearing loss can lead to social isolation, depression, anxiety, loss of employment, and can contribute to cognitive decline.
New autism diagnosis under consideration by experts
Harry Cockburn
The Independent US ⎸ February 17, 2026
A panel of international experts are calling for the introduction of a new diagnosis of “profound autism” amid concerns that people with the greatest need for support are being overlooked in services, research and funding.
Noting that awareness of autism “has grown monumentally in the past 20 years”, they said “much more could be done to improve life outcomes” for those with the disability.
The proposed “profound autism” category, recommended by a panel commissioned by The Lancet, would apply to autistic children aged eight and over, who have little or no functional language, an IQ below 50, and require round‑the‑clock supervision.
Researchers say the definition is intended to help governments and service providers plan more effectively for those with the most complex needs.
Nonetheless, the introduction would represent a considerable challenge.
“Change will depend on investments in science focused on practical clinical issues, and on social and service systems that acknowledge the potential for change and growth as well as the varied, complex needs of the autistic individuals and their families whose lives could be changed with such an effort," the authors said in the journal article.
The research team partly based their recommendation on a new Australian study examining how the category might work in practice.
They found around 24 per cent of autistic children met, or were likely to meet, the criteria for profound autism – a proportion similar to international estimates, according to three academics from the University of Sydney who were involved in the study, and wrote about their findings in The Conversation.
The research analyzed data from 513 children assessed for developmental conditions between 2019 and 2024.
The study also found that children in this group were more likely to display behaviors that pose safety risks. Almost half had attempted to run away from carers, compared with around a third of other autistic children.
However, the researchers stressed that significant challenges were also present among children who did not meet the proposed criteria: one in five engaged in self‑injury, and more than a third showed aggression.
Crucially, the proposed definition of profound autism did not always align with existing diagnostic “levels” used to determine support and funding. Some children who appeared to meet the criteria were classified at lower support levels, while others receiving the highest level of support did not meet the proposed definition. The researchers warned this mismatch could complicate funding decisions unless the criteria are adapted and carefully introduced.
One practical concern is the proposed age threshold of eight. The researchers suggested that the threshold is useful because by that age, their cognitive and communication abilities are considered more stable. However, most children are diagnosed before that age, meaning the introduction of a new diagnosis category means families may need repeat assessments, adding pressure to already stretched diagnostic services.
Despite these challenges, the study’s authors said the category could provide a clearer way to identify those with the highest support needs – provided it is used carefully and communicated in inclusive language that recognizes each child’s strengths as well as their challenges.
They said including the category in future clinical guidelines could help ensure services are better planned and resourced, reducing the risk that children with the most complex needs fall through the cracks.
The researchers also offered practical advice for parents who believe their child is autistic and requires substantial support, urging families to clearly communicate safety concerns, seek guidance for the whole family, connect with other carers, and prioritize safety planning with clinicians.
Opinion: Why it’s time to rethink the autism diagnosis process
Jamie Pagliaro
Media Feed ⎸ March 30, 2026
I’ve been thinking a lot lately about a question that sparked an incredible—and at times, heated—debate on a LinkedIn post I recently wrote: Should ABA providers be the ones diagnosing autism?
The feedback was overwhelming, ranging from enthusiastic support to deep concern about ethical boundaries. When I see this many thoughtful clinicians disagreeing, it tells me we’re at a major turning point for the field. I wanted to use this space to dive deeper into the conversation, specifically addressing the points raised by the community.
The Reality of the “Wait and See” Trap
For most families I talk to, the diagnostic process feels like an exhausting obstacle course. They might wait months—sometimes over a year—just for an evaluation. As LinkedIn commenters rightfully pointed out, waiting for diagnoses can have long-term, life-long consequences. These delays aren’t just an inconvenience; they represent lost opportunities during a critical developmental window.
From a systems view, it’s inefficient. From a family view, it’s heartbreaking. This is why many LinkedIn commenters see integration as a “net gain,” noting that hospital systems already refer internally for hundreds of services without the same level of scrutiny.
The Risks: “Pseudo-Diagnoses” and Conflicts of Interest
However, we have to address the elephant in the room. Some of the most poignant pushback came from LinkedIn commenters who warned against pseudo-diagnoses that serve no purpose other than rushing kids into a clinic.
The concerns generally fall into three buckets:
Scope of Practice: BCBAs are experts in behavior, but they aren’t trained for the complex medical and psychological differential diagnosis required to rule out things like genetic disorders or TBI.
Confirmation Bias: If a clinic diagnoses a child and immediately recommends 40 hours of their own therapy, is that a clinical necessity or a sales tactic?
Ethical “Dual Relationships”: You can understand this concern by comparing diagnosing and treating autism to physical therapy—we don’t let PTs diagnose the musculoskeletal injuries they treat for a reason.
Shifting the Conversation: How to Evolve Responsibly
So, how do we bridge the gap between “we need faster access” and “we must protect clinical integrity”? I don’t think the answer is to stay in our silos. We shouldn’t equate “newness” with being “unethical.” We should be asking how to make this happen safely.
Watch our Webinar: How Two Researchers Turned Eye-Tracking Science Into a Breakthrough for Autism Diagnosis and Assessment
The Non-Negotiable Guardrails
Based on suggestions from experts and LinkedIn comments on my original post, here is what a responsible integrated model could look like:
Qualified Clinicians Only: Diagnosis must be done by licensed psychologists or physicians, even if they are hosted within an ABA organization.
Operational Separation: There should be a “firewall” between the diagnostic team and the intake/sales team.
The “Bridge” Model: Try a fascinating “provisional behavioral classification”—a short-term bridge to get kids into early intervention while they wait for a full neuro-pediatric workup.
Full Transparency: Families must be explicitly told they are under no obligation to use that provider’s therapy services just because they got their diagnosis there.
Final Thoughts
The future of autism care is moving toward a “whole-person” approach. Integrated, interdisciplinary teams should be the baseline for responsible practice, not just a trend.
The goal isn’t just to debate these new models, but to shape them. We owe it to families to provide a path that is both fast and beyond reproach.
Long-term exposure to air pollution tied to higher risk of physical disability, study finds
Foster Stubbs
McKnights Long-Term Care News ⎸ February 19, 2026
Older adults who had experienced prolonged exposure to air pollution were at higher risk of transitioning into more severe states of physical disability, according to a February study published in JAMA Network Open.
The study observed 29,790 adults older than 50 years from the Health and Retirement Study (HRS) who were followed up for nearly 20 years and participated in at least two interviews between 2000 and 2016. Researchers measured the outdoor 10-year average ambient concentrations of particulate matter (PM) at each respondent’s residential addresses.
The results showed that disability progression events occurred during 15,653 observations (15%) and the most frequently observed physical transitions were from healthy to physical function limitations and physical function limitations to ADL disability. Higher particulate matter concentrations were also associated with greater hazards of transitioning from a state of no physical function limitations to any physical function limitation and ADL disability.
“Our results suggest that reducing certain key air pollutants may delay the onset of physical function limitations and ADL disability, as well as lessen the severity of physical disability even after the process begun, thereby shedding light on future regulations and policies in targeting interventions to control health care expenses and achieve the goal of healthy aging,” authors said.
Building Meaningful Lives: How Moving Forward Towards Independence Supports Neurodivergent Adults
Marita Musante, Barbara Montaldo, Mark Goodenough, Moving Forward Towards Independence
Autism Spectrum News ⎸ January 5th, 2026
Mac Anderson and Tom Feltenstein wrote; Change is Good… You Go First and understanding that change and the transitions it requires is a source of anxiety for much of humanity. Twenty-eight years ago, a group, all parents of neurodivergent children, were feeling the full weight of transition terror. Their fear fueled action and Moving Forward Towards Independence (MFTI) was founded in Napa, California.
Families know that the path toward independence for our neurodiverse community requires careful planning and appropriate resources. Our founding families recognized this back in the late 1990s. MFTI is a transitional residential program that provides Independent Living Support (“ILS”) for adults 18 years and older who can live on their own. We also offer support throughout the transitional process, along with guidance and options for prospective families and participants. Our goal is to assist in streamlining this process and provide families with the resources they need to make informed decisions.
MFTI charged itself with creating an environment that allowed neurodivergent adults to live, work, volunteer, learn and engage with peers. Building a meaningful life with meaningful relationships is a facet of adult life which in our experience has proven to be something that all our residents value. This task has faced a multitude of challenges over the years, and our folks have met each hurdle with determination familiar to any parent of a neurodivergent child.
MFTI’s program participants are referenced as “residents.” They occupy three distinct tiers within the program. Potential residents may opt to attend the annual family picnic, holiday gathering, or monthly BBQ before making any significant commitment. A three-day and 2-night stay followed by a 30-day trial period in Tier 1 introduces prospective residents to staff and, equally importantly, peers. MFTI familiarizes us with the individual’s needs, wants and dreams and, in turn, the individual’s feelings and observations take root.
MFTI’s tiers reflect their essence. Residential, Tier 1, participants live in one of two houses in either a private or shared room. Both homes have modern kitchens with dining areas, two full baths, living rooms and laundry facilities. The homes share an open, shady courtyard and community room with the program at large. All residents are always welcome on our campus. Tier 1 residents take turns as lead dinner cook, share home maintenance chores, and may attend a day program or volunteer activity, take classes on campus or at the nearby Napa Valley Community College, and work continuously with staff to gain independent living skills. A 24-hour staff presence is maintained on campus.
Apartments and a collection of small cottages adjacent to our campus comprise housing for Transition, Tier 2. Residents prepare their own breakfast and lunch, but most join the Residential crew for dinner pitching in with meal prep and clean-up. With staff support, Tier 2 residents shoulder the responsibilities of shopping, banking, laundry and other “adult administrative tasks,” building that sometimes-elusive executive function capacity.
MFTI’s Community, Tier 3, residents have acquired a level of depth and mastery in independent living skills. Tier 3 residents often drop by for a meal or social time but most of their time is dedicated to employment or volunteer activities. Private homes and rentals within a five-block radius comprise Tier 3.
Transitions among tiers are fluid, and as with all of us, life circumstances can alter what support is necessary. Change can induce anxiety. Knowing that change is bidirectional is a comfort to MFTI residents. If they need a break from a housemate, experience a loss, have a nasty cold or need shelter from a storm/fire/earthquake, comfort, safety, and solace are available at our campus.
Case Managers, Support Staff and the Executive Director Team communicate and support residents daily. Most residents are State of California Regional Center Clients, participating in the Self Determination Program or as recipients of traditional services. MFTI’s Case Managers collaborate with residents and their families/caregivers to set goals, evaluate progress and identify unmet needs. Independent living skills are built through both one on one and group activities. MFTI residents live, work, volunteer and play in Napa. Regional outings are common on weekends as residents attend sporting events, Farmers markets, performances or other requested activities in our region, connecting with each other as they engage with the greater community. Peer social activities stave off the isolation and loneliness that can impede the sense of belonging we all desire.
MFTI is proud to have residents of founding families still connected to our program – stability amid transition. Overall, there is also an interconnectedness to this transition focus, with flexibility at the core of the practice. In fact, this combination of flexibility during transitions along with set programmatic goals helps all parties but is also demanding in various situations with the residents. The classic presentation of the suboptimal results from unsupported novel situations for people with IDD exists but MFTI’s program carefully lessens these negative moments via Case Manager, Support Staff, and family communication. Residents and their MFTI Case Managers draft personal goals that entail transitions in all life skills, climbing the pyramid of success.
FDA Launches Framework for Accelerating Development of Individualized Therapies for Ultra-Rare Diseases
FDA ⎸ February 23, 2026
The U.S. Food and Drug Administration today issued draft guidance for sponsors seeking approval for targeted individualized therapies by generating substantial evidence of effectiveness and safety when randomized controlled trials are not feasible due to small patient populations.
The draft guidance, issued by the Center for Biologics Evaluation and Research and Center for Drug Evaluation and Research, specifically discusses genome editing and RNA-based therapies such as antisense oligonucleotides but leaves open the potential that this framework may apply to additional tailored therapeutics provided they directly address the underlying specific cause of the disease.
“President Trump promised to accelerate cures for American families — and we are delivering, especially for children with ultra-rare diseases who cannot afford to wait,” said Health and Human Services Secretary Robert F. Kennedy, Jr. “We are cutting unnecessary red tape, aligning regulation with modern biology, and clearing a path for breakthrough treatments to reach the patients who need them most.”
“This guidance is a critical step the FDA is taking to tailor our regulatory approach to patients with ultra-rare conditions,” said FDA Commissioner Marty Makary, MD, MPH. “It is our priority to remove barriers and exercise regulatory flexibility to encourage scientific advances and deliver more cures and meaningful treatments for patients suffering from rare diseases.”
The draft guidance focuses on therapies that target a specific genetic, cellular or molecular abnormality and are designed to correct or modify the underlying cause of disease. Key criteria include:
Identifying the disease-causing abnormality.
Demonstrating the therapy targets the root cause or proximate biological pathway.
Relying on well-characterized natural history data in untreated patients.
Confirming successful target drugging or editing.
For traditional approval, therapies should demonstrate improvement in clinical outcomes, disease course, or biomarkers if they are established to predict clinical benefit.
“Designing treatments unique to individual patients has always been the promised goal of personalized medicine,” said Chief Medical and Scientific Officer and Center for Biologics Evaluation and Research Director Vinay Prasad, MD, MPH. “After 25 years the FDA has, for the first time, outlined a framework to facilitate these approvals. The Plausible Mechanism Framework is a revolutionary advance in regulatory science.”
“The Plausible Mechanism draft guidance creates a novel framework through which cutting-edge treatments tailor-made for patients with ultra-rare diseases can be used as a basis for FDA approval,” said Center for Drug Evaluation and Research Acting Director Tracy Beth Høeg, MD, Ph.D. “We anticipate our Plausible Mechanism draft guidance will inspire industry to place increased focus on individualized therapies, thereby driving innovation, improving safety, lowering costs and offering more patients with ultra-rare diseases a unique shot at a life-saving treatment.”
Because genome editing technologies are designed to be highly specific to unique DNA sequences, a product targeting different mutations in a single gene could be included in a single product application and potentially evaluated through the use of master protocols that evaluate these product variations in a single trial. A highly supported “plausible” mechanism of action may then be used to support the addition of other such genome editing product variants, intended to treat patients with mutations that were not included in the clinical trial used to support the original approval.
The FDA recognizes that an adequate and well-controlled clinical investigation in this context will include a small sample size, therefore, investigation results should be sufficiently robust to exclude chance findings. When determining effectiveness, the FDA considers the specific disease, the strength of the evidence and the challenges of conducting clinical investigations for individualized therapies.
The draft guidance, Considerations for the Use of the Plausible Mechanism Framework to Develop Individualized Therapies that Target Specific Genetic Conditions with Known Biological Cause, is available for public comment. Comments must be submitted within 60 days of publication in the Federal Register at Regulations.gov.
The FDA is committed to advancing safe and effective therapies for rare diseases and ensuring no family is overlooked because their condition is uncommon.
Why health self-advocacy is an essential life skill
Alan P. Feren, MD & Joyce Griggs
KevinMD.com ⎸ October 11, 2025
Money management and career planning are considered life skills (but the skill that shapes health self-advocacy) deserves the same status. Without it, care suffers. My family member was recovering from surgery, facing medication safety concerns, severe anxiety, and the need for constant care. At the same time, I was managing my own records and preventive health. Like so many women, I had become the family’s chief health executive, carrying responsibilities that stretched across every part of care. Overwhelmed is one word that comes to mind.
Health self-advocacy is the practice of taking the lead in a personal health care plan. It often begins with an immediate need (such as navigating recovery after surgery) and grows as health circumstances evolve. Over time, it becomes a lifelong skill set grounded in eight core pillars:
The eight pillars of health self-advocacy
Mindset and foundations: Approach care as a partnership, even when the path is uncertain.
Health literacy: Strengthen the ability to evaluate reliable information and weigh risks and benefits.
Records and documentation: Maintain a Personal Health Record, family history, and essential documents such as advance directives and proxies.
Visit preparation: Approach each appointment with an agenda, clear questions, and a follow-up plan.
Care team building: Assemble trusted providers, pharmacists, navigators, and supportive peers.
Treatment and adherence: Follow care plans, monitor progress, and incorporate supportive therapies.
Financial navigation: Manage bills, insurance claims, appeals, and assistance resources.
Reflection and growth: Assess what worked, set new priorities, and expand advocacy skills over time.
Not every pillar is built at once; patients and caregivers begin with what matters most and expand as needs evolve. Today, resources are scattered, and KFF reports that one in four Americans avoids care because the system feels too complex. The need for self-advocacy skills is no longer optional; it is urgent.
The current state of health self-advocacy
Health self-advocacy is a learned skill set that evolves over time: preparing, speaking up, partnering in decisions, and following through. These skills matter: Engaged patients have better outcomes, fewer hospitalizations, and higher satisfaction (AHRQ, Health Affairs, and Health Services Research). This is not just a patient problem. Unprepared visits drag on, information is missed or gets lost, and errors multiply as clinicians feel the strain, and caregivers are left scrambling to fill the gaps.
The case for non-condition-specific advocacy tools: why it matters
Most advocacy resources are scattered or tied to a single condition or stage of care. Many patients live in limbo when their symptoms defy easy categorization. They are left to navigate uncertainty, repeated referrals, and delayed diagnoses alone, precisely when guidance and support are most needed.
A comprehensive hub can close this gap by providing patients and caregivers with accessible, reliable guidance at every stage of care. Such a resource does more than support individuals; it strengthens the clinician-patient partnership, restores trust in the system, reduces unnecessary costs, and leads to measurable improvements in outcomes. Everyone involved in care delivery benefits.
Condition-agnostic tools matter across the full spectrum of care—from prevention to urgent needs, chronic management, and end-of-life planning. A trusted, transparent hub equips patients step-by-step, meeting them where they are, while clinicians also benefit: A BMC study found that organized patients cut history-taking time by nearly a third, strengthening rapport rather than weakening it.
A blueprint for building skills
Trust is built through an open review process, patient- and clinician-reviewed updates, and evidence-based information. A trusted hub could save patients and caregivers from having to start from scratch, providing advocates with a stronger foundation, and helping clinicians partner with prepared patients.
Condition-specific groups, advocates, coaches, and peer communities also benefit from a shared foundation of advocacy skills. This foundational hub lets them focus on research, treatment, and connection while strengthening their specialized support. The aim is not replacement but reinforcement, enabling each community to adapt resources to unique needs.
Examples of tools and resources include visit prep checklists, personal health record guides, insurance navigation tools, clinician-facing guides, and digital health tools like symptom trackers or remote monitoring solutions, e.g., wearable devices. Some already exist, such as plain-language visit preparation guides and personal health record templates developed by the United States of Healthcare. These are not the whole answer, but they are foundational for scaling a hub.
Health self-advocacy as an essential life skill
Health self-advocacy is not optional; it touches every aspect of health and life. Like financial literacy or career readiness, it is a core life skill that everyone can learn and use. System reform will take years, but self-advocacy tools can be implemented today. A comprehensive, trusted hub that unites existing resources into condition-agnostic tools would make this possible, helping people build the skills to navigate care more effectively.
The results are tangible:
Community: stronger networks, less isolation
Confidence: greater sense of control
Visits: more efficient and effective encounters
Clarity: fewer errors and missed steps
Partnership: stronger clinician–patient relationships
Like financial literacy, health self-advocacy is a life skill we cannot and should not live without. It can improve every aspect of health care.
Georgia State Experts to Play a Key Role in the Largest Study of Profound Autism
Noelle Toumey Reetz
Georgia State University ⎸ February 26, 2026
Experts from the Translational Research in Neuroimaging and Data Science (TReNDS) Center at Georgia State University will play a key role in the largest study ever conducted to investigate the causes of profound autism in children and develop possible treatments.
The research project is funded with a $21.9 million grant from the late Bernie Marcus and The Marcus Foundation to the Marcus Autism Center, a subsidiary of Children's Healthcare of Atlanta.
The five-year study will include 7,500 children from birth to age 12, following them before symptoms appear and throughout their treatment.
The project will help researchers learn more about autism in children by looking at patterns in development, behavior, brain activity and genetics. The aim is to better understand why autism affects some children more severely than others and to find more effective therapies, especially for children with the most serious forms of autism.
The study brings together experts from the Children's Behavioral and Mental Health and Neurosciences Research programs, the Emory University School of Medicine's Department of Human Genetics, and the tri-institutional TReNDS Center at Georgia State.
Vince Calhoun is a Distinguished University Professor of Psychology, founding director of the TReNDS Center and a Georgia Research Alliance Eminent Scholar in Brain Health and Image Analysis. He will direct the project's NeuroBridge AI Core, which integrates brain imaging and behavior and biological data to better understand autism development and treatment response.
“This research will take a pragmatic, real-world approach - embedding procedures directly into everyday clinical practice and enrolling a broad range of patients without excluding key groups - so that the predictors we identify are truly actionable where care decisions actually happen,” Calhoun said.
The research team is led by Ami Klin, director of the Marcus Autism Center and a Georgia Research Alliance Eminent Scholar. The work will explore profound autism from several angles with the goal of developing new treatments and improving quality of life.
“The goal is to enable precision medicine interventions that will accelerate learning, make symptoms less severe and improve response to treatment in children with profound autism, and possibly even prevent profound disability from emerging in the first place.”
Spearheading the NeuroBridge AI Core
The TReNDS Center, a collaboration among Georgia State, Emory University and Georgia Tech, will head the NeuroBridge AI Core (NAIC). The NAIC will serve as a bridge between Marcus' pediatric neuroimaging and neurophysiology expertise and TReNDS' strengths in informatics, and builds on an existing partnership with the Marcus Autism Center.
Event guide: The 4th Precision Medicine in Inflammatory Bowel Disease Summit eBook Precision medicine is reshaping how Crohn’s disease and ulcerative colitis are treated, shifting the focus to therapies designed for remission.
The core will function as the project's central artificial intelligence and data integration engine, combining large-scale clinical observations with advanced neuroimaging and behavioral and genomic data to identify biological pathways and predictors of treatment response.
“We're honored to help lead the NAIC. This is a rare chance to pair real-world clinical care with state-of-the-art brain, behavioral and omics measures at unprecedented scale, and to turn those data into actionable predictors that can improve outcomes for children with profound autism and their families,” Calhoun said.
Calhoun will lead a team focused on two key drivers of this work: advanced tools that capture detailed, real-world data, and powerful AI and neuroinformatics methods that analyze this complex information to identify biomarkers and improve predictive accuracy. These efforts will leverage scalable computing and multimodal data fusion approaches to model developmental trajectories and generate individualized brain-health profiles that may help guide clinical decision-making.
“We’re proud to see our researchers contributing to this work alongside such respected partners,” said Donald Hamelberg (Ph.D. '01), vice president for Research and Economic Development at Georgia State. “This kind of collaboration moves us closer to real, meaningful impact in our communities.”
Children with profound autism encounter major challenges, such as severe intellectual disabilities and little to no ability to speak. They can struggle with everyday tasks and often need constant care and assistance.
Autism spectrum disorder affects more than 2.3 million children in the U.S. More than 1 in 4 of these children, approximately 620,000, are classified as having profound autism.
This new research collaboration highlights Georgia State’s growing role as a hub for neuroscience research. The NeuroBridge AI Core further positions Georgia as a national leader in pediatric neuro-AI and translational brain science. With strong collaborations across the state and cutting-edge programs, Atlanta and Georgia are positioned to be a leader in brain health innovation.
“The TReNDS Center and the Marcus Autism Center are among the world-class assets that make Georgia a focal point for neuroscience research,” said Tim Denning, president and CEO of the Georgia Research Alliance.
“Georgia State University, Emory University and Children’s Healthcare of Atlanta are all vital contributors to collaborative endeavors that pursue new answers to autism and other areas of brain health. These kinds of collaborations are needed more than ever to make progress in human health.”
Understanding the dynamic association between sleep quality and mood in children and adolescents with cerebral palsy
Hangsel D. Sanguino, Chris A. Clark, Laura K. Brunton, Elizabeth G. Condliffe, Daniel C. Kopala-Sibley, Melanie E. Noel, Sandra J. Mish, Carly A. McMorris
Science Direct ⎸ March 2026
Highlights
First study examining daily sleep–mood links in youth with cerebral palsy.
Sleep quality, not duration, predicted next-day positive and negative affect.
Bidirectional effects found between negative affect and sleep quality.
Daily diaries captured real-time fluctuations in sleep and mood.
Findings highlight sleep quality as a target for mental health interventions.
Abstract
Background
Cerebral palsy (CP) is one of the most prevalent long-term childhood conditions. Children and adolescents with CP are at elevated risk for mental health difficulties, which contribute to reduced quality of life and daily functioning. Sleep difficulties are a well-established risk factor for mental health. Poor sleep quality has been linked to worse mood in youth with and without neurodevelopmental disabilities. However, most studies in youth with CP have focused on average sleep metrics over time, rather than examining intraindividual variability (IIV) using daily assessments, which may reduce retrospective reporting biases. This study examined the dynamic and bidirectional association between sleep quality, sleep duration, and mood in youth with CP.
Methods
Thirty-two youth with CP (aged 11–17 years; 45.5 % girls) were recruited from health and community agencies. Youth completed daily diaries over seven consecutive days. Each day, youth rated their sleep quality, sleep duration, and levels of daily mood (operationalized as positive and negative affect using the Positive and Negative Affect Scale [PANAS]). Multilevel models examined bidirectional associations between sleep quality, sleep duration, and mood, controlling for gender, age, and GMFCS level.
Results
At the between-person level, higher previous-day sleep quality was significantly associated with greater next-day positive mood and lower negative mood, and higher negative mood was associated with poorer sleep quality the following night. At the within-person level, increases in sleep quality were associated with higher next-day positive mood only. Sleep duration was not significantly associated with next-day mood at either level.
Conclusion
Findings highlight both between-person and within-person associations between sleep quality and mood in youth with CP, with bidirectional associations observed at the between-person level and unidirectional associations at the within-person level.
Educating Medical Trainees on Mental Healthcare and Intellectual and Developmental Disabilities
Andrea Palmieri, Joan B. Beasley, Micah Peace Urquilla, Jennifer McLaren
Developmental Disabilities Network Journal
Abstract
Many children and adults with intellectual and developmental disabilities (IDD) experience mental health conditions and commonly receive treatment with psychotropic medications. Prescribers often overuse these medications in children with IDD, who are frequently treated with polypharmacy and antipsychotics, a trend that continues into adulthood. Medical trainees receive little training regarding the IDD patient population. This paper describes the development and evaluation of an evidence-informed, easy-to-use training curriculum. The 6-hour training establishes a foundation for medical trainees regarding the treatment of mental health conditions in people with intellectual and developmental disabilities (IDD-MH) as part of an integrated health, interdisciplinary treatment approach. An exploratory study was conducted to evaluate the training curriculum's effectiveness in improving knowledge, perceptions, and attitudes toward diagnosis and treatment of mental health conditions in people with intellectual and developmental disabilities. The training was provided to 99 students including physician assistant students, medical students and psychiatry residents, along with child psychiatry fellows at three universities. Eighty-two participants completed pre- post-assessments and module evaluations. Participants reported overall satisfaction with the training. Findings indicate significant improvements across effectiveness measures.
Plain Language Summary
Many children and adults with intellectual and developmental disabilities (IDD) also have mental health conditions. It is common for people with IDD to be put on psychotropic medications, which affect a person’s mind, mood, and behavior. Doctors often prescribe these medications too much for people with IDD. It is also common for people with IDD to take more than one medication at a time, a practice called polypharmacy. Polypharmacy can be risky. Strong medications like antipsychotics are also used more often with this group. May people with IDD stay on these medications from childhood into adulthood.
Medical trainees do not get much training in how to care for people with IDD. This paper talks about a training program created to fix that problem. It will discuss how effective a training program was at improving knowledge, comfort level, and attitudes of medical trainees. It is based on evidence, and easy to use. The training program teaches medical students about mental health issues in people with IDD. The training program is 6 hours long.
Researchers studied the training to see how well the program worked. They looked at changes in knowledge, attitudes, and comfort in diagnosing and treating mental health conditions in people with IDD.
A total of 99 students from three different universities took part in the training. These students included physician assistant students, medical students and psychiatry residents, and child psychiatry fellows. Eighty-two students completed surveys before and after the training and gave feedback about the program. Overall, students were happy with the training. Results showed that the program helped improve all the areas it aimed to improve.