Opportunity Has Closed
The ALS Association’s Quality of Care Research Awards support studies focused on improving the quality of ALS care or increasing the implementation of evidence-based care.
Overview
Specialized multidisciplinary care and symptom management are vital components of ALS care, helping to extend survival and improve quality of life (Hogden et al., 2017; Miller et al., 2009). With two new disease-modifying drugs approved by the FDA in the past year, along with rapid technological changes in the practice of medicine, the landscape of ALS treatment and care is changing at a pace never before seen by the ALS community. However, transforming these advances into meaningful improvements in outcomes for everyone, everywhere, will require greater insight into the best ways to optimize the efficacy, efficiency, and accessibility of ALS care.
These two-year awards with a maximum budget of $500,000 seek to support the development and/or testing of interventions intended to improve quality of life; make ALS care safer, of higher quality, more accessible, more equitable, and more affordable; reduce complications; and enhance service delivery at the point of care.
To view the full funding announcement, click here.
Scope
For this funding opportunity, we will accept applications from all scientific disciplines on topics that have the potential to improve the health and quality of life of people with ALS and/or reduce the burdens or complications of the disease.
Topics supported could include, but are not limited to:
Improving Existing Therapies
- Developing and/or testing interventions to improve quality at the point of care.
- Optimizing combinations of FDA-approved disease-modifying drug treatments (e.g., Riluzole, Radicava, Relyvrio, Qalsody) or non-pharmacological approaches to improve care.
- Developing and/or testing protocols to improve the efficiency of intrathecal medication administration and/or reduce side effects.
UPDATE – APRIL 2024: Relyvrio was voluntarily withdrawn from the market by Amylyx following a phase 3 trial that failed to show it was effective. The ALS Association stands by its decision to push for early approval of Relyvrio given the promising phase 2 trial data and the safety of the treatment. At the time, we said that if it turns out to be ineffective, at worst, people living with ALS would have taken an ineffective therapy without risk of harm. If it was indeed effective, delaying access would have meant that people living with ALS would have lost two years of being able to take a life-extending therapy. In the interests of transparency and education, we are leaving this information up for future reference. People living with ALS need life-saving treatments and we are working as urgently as possible to advance the many more potential treatments in clinical trials.
Reducing Complications
- Developing and/or testing care interventions intended to reduce complications of the disease, such as falls, pneumonia, emergency room visits, respiratory failure, and sialorrhea, amongst others.
- Developing and/or testing care interventions intended to address nutritional needs, respiratory management, coping, isolation, medication alignment, or palliative care.
- Developing and/or testing strategies to reduce caregiver burden.
- Developing and/or testing protocols for symptom management and end-of-life care.
Improving Systems and Services
- Developing and/or testing interventions intended to reduce racial, ethnic, geographic, gender, or other disparities in diagnosis, access to care, and treatment outcomes.
- Developing and/or testing strategies to reduce time to diagnosis.
- Developing and/or testing interventions to increase utilization of evidence-based practices, such as multidisciplinary ALS clinics, high-quality respiratory care, and genetic counseling and testing.
- Developing and/or testing telehealth or telemedicine approaches to reduce burden on ALS specialty clinics and improve quality of care for people with ALS.
- Developing and/or testing strategies to improve quality of care for people with ALS being managed in their community, such as improving links between primary care services, general neurology, and specialized ALS clinics or connecting clinical services at multidisciplinary clinics and non-multidisciplinary clinics.
- Developing and/or testing support systems, education, or programs for health care professionals to manage fatigue and the emotional distress they encounter in ALS practice.
The following are considered out of scope for this funding opportunity and will be administratively withdrawn:
- Development and testing of assistive technologies (please consider applying for our Assistive Technology Grants instead)
- Development and testing of new pharmacological interventions
- Studies conducted outside the United States (due to the unique context of the American health care system)
Funding and Eligibility
Budgets for total costs up to $500,000 (inclusive of both direct and indirect costs) may be requested for a period of 2 years. Indirect costs are limited to 10% of total direct costs. All funds must be expended within the approved period of performance.
Individuals with the skills, knowledge, and resources necessary to carry out the proposed research may apply as the principal investigator. Applicants do not need to have a scientific background in ALS research, so we encourage collaboration between implementation science, quality improvement, and health services researchers and ALS clinician-scientists. Established investigators, early career investigators, and investigators from outside the ALS field are all encouraged to apply. Junior postdoctoral fellows are not eligible to apply as principal investigators.
Deadlines
- Letter of Intent Due Date: August 9, 2023, 5 p.m. U.S. EDT
- Full Proposal Due Date (by invitation only): October 11, 2023, 5 p.m. U.S. EDT
- Anticipated Award Decision: December 2023
- Anticipated Earliest Start Date: January 2024
Our expectation is that contracting will be completed within 60 days of the award offer. If not, we reserve the right to rescind the award offer and redirect the funds to other projects.
Submissions
All application materials must be submitted electronically. To register for a Proposal Central account, create a new Letter of Intent or access an existing saved Letter of Intent, please visit proposalcentral.com.
Instructions for Proposal Central:
Questions
We encourage inquiries concerning this funding opportunity. Please submit your questions and other related correspondence to ResearchGrants@als.org.
