Understanding social connections in ALS patients
Official title: Social Connectedness in People with Amyotrophic Lateral Sclerosis: The Impact of Dysarthria, Immobility, and Psychosocial Factors
Funded at Mgh Institute of Health Professions · NIH-10980441 · Data updated 2026-11-12
This study is looking at how ALS impacts people's ability to stay connected with others, especially when it comes to talking and moving around, and it aims to find ways to help improve social interactions for ALS patients over six months using their smartphones.
Quick facts
| Grant type | R01 grant |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Mgh Institute of Health Professions NIH-funded |
| Lab location | 1 site (Charlestown, UNITED STATES) |
| Project start | September 1, 2024 |
| Project end | June 30, 2029 |
| Funding year | 2024 |
| Award (this year) | $586,013 |
| NIH project number | 1R01DC021446-01A1 |
| Project ID | NIH-10980441 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for this research are individuals diagnosed with amyotrophic lateral sclerosis who experience speech and mobility challenges.
✕Less likely to help
Patients with ALS who do not experience significant speech or mobility impairments may not benefit from this research.
What this research studies
This research investigates how amyotrophic lateral sclerosis (ALS) affects social connectedness among patients, particularly focusing on the challenges posed by speech and mobility impairments. By conducting a longitudinal study with 200 ALS patients over six months, the research aims to identify the causes of social disconnection and develop strategies to enhance social interactions. Participants will use their smartphones to provide data through surveys and speech recordings, as well as GPS tracking, to better understand their social experiences and needs.
Why it matters
Potential benefit: If successful, this research could lead to improved strategies for reducing isolation and enhancing the quality of life for ALS patients.
How similar studies have gone: While the focus on social connectedness in ALS is relatively novel, similar approaches in other conditions have shown promise in improving patient outcomes.
Where this research is happening
-
Mgh Institute of Health Professions
Charlestown, United States Active
Researchers
- Principal investigator: Connaghan, Kathryn Patricia — Mgh Institute of Health Professions
- Study coordinator: Connaghan, Kathryn Patricia
Related research
Other NIH-funded projects on the same topics.
-
Investigating how DNA damage and repair mechanisms are altered in ALS and frontotemporal dementia.
This study is looking at how problems with DNA repair might contribute to conditions like ALS and frontotemporal dementia, and it’s testing ways to fix these issues in cells from patients to help develop new treatments.
-
Understanding how work exposures and genes influence ALS risk
A study is building a long-term group of people at higher risk for ALS to see how their jobs, exposures at work, and genes together affect if and when the disease might develop.
-
NUZ-001: a treatment option for ALS to protect nerve cells
A small molecule called NUZ-001 is being tested to help people with ALS by improving cell systems that keep proteins balanced and prevent harmful protein clumps.
-
Alpha5 integrin's role in ALS: how a cell switch worsens disease
Aims to understand how a specific protein called alpha5 integrin in immune cells affects ALS progression and whether blocking it can help extend life.
-
C9orf72 ALS/FTD Prevent: prepping for future treatment
This grant aims to get ready for a preventive treatment for people who carry the C9orf72 genetic change that can lead to ALS or frontotemporal dementia.
-
Air pollutants and ALS: mapping environmental links to motor neuron disease
This NIH grant explores whether different air pollutants are linked to the development of ALS and uses a large U.S. data set to look for environmental risk factors.
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.