PVA Education Foundation Enables Assistive Technology Demonstration Project

PVA- Paralyzed Veteran's of America


The ALS Association Greater New York Chapter’s (ALS-GNY) Assistive Technology Demonstration Project enhances the lives of people with ALS (PALS) by building awareness of the computer and other technology that can help them communicate, and remain mobile and independent, for as long as possible. This critical effort is currently being funded by the Paralyzed Veterans of America Education Foundation (PVA), with a grant of $44,157.

The Project involves ALS-GNY’s assistive technology specialists, as well as members of our four Regional care teams, who are demonstrating a variety of available equipment to PALS, their caregivers and healthcare providers. Demonstrations take place during Home Visits and PALS and caregiver support groups, and at our five ALS-GNY Centers, area nursing homes, long-term care facilities, veterans’ hospitals, and hospices.

One PALS who benefited from the Project is a 68-year-old living in a nursing home who’d been successfully using eye-tracking software to enable communication. When the technology stopped working for her, an ALS-GNY specialist visited to find out why and provide a solution. Due to her disease progression, the patient’s posture had shifted enough to misalign her eye and computer. In addressing the issue, our specialist also trained nursing home staff about the technology and how to help their patient maintain the ability to communicate going forward. Healthcare providers also learned about the full complement of ALS-GNY’s patient services, which enhances their ability to care for every PALS in their care.

ALS-GNY is grateful to the PVA Education Foundation for their generosity, which is positively impacting hundreds of PALS, as well as their caregivers and healthcare providers, in our region.

Veteran and PALS Andrew Williams, and wife Antoinette Williams

 

The ALS Association Greater New York Chapter works hard with the help of PVA to provide services and care to veterans diagnosed with ALS.

Seen here is veteran and PALS Andre Williams, and wife Antoinette Williams.

The ALS Association Funds Five New Grants in Clinical Care Management and Data Collection

The ALS Association is pleased to announce its support for four new clinical management grants that will address the gaps in amyotrophic lateral sclerosis (ALS) clinical care whose funding collectively totals to $655,855. We are also proud to announce one new ALS Association-Initiated grant awardee whose project is to streamline data collection at ALS clinics for funding of $100,000.

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Eventually, people with ALS lose the ability to initiate and control muscle movement, which often leads to total paralysis and death within two to five years of diagnosis. For unknown reasons, veterans are twice as likely to develop ALS as the general population. There is no cure, and only one drug approved by the U.S. Food and Drug Administration (FDA) modestly extends survival.

ALS Association-Initiated Grants
The ALS Association defined areas of specific focus for research and invited experts in their respective fields to submit proposals. The ALS Association convenes a review board to discuss proposals and makes selections based on the merits of each one. The newly funded ALS Association-Initiated Grant include:

Robert Miller, M.D., Sutter West Bay Hospitals, ALS Forbes Norris MDA/ALS Research Center, San Francisco.
Topic: Establishing uniform methods of data collection in ALS centers that use Epic software for their electronic health record and documentation
Award: $100,000 over nine months

TREAT ALS™ Clinical Management Grants
The aim of the TREAT ALS™ Clinical Management Grant Program is to improve care of people living with ALS with a focus on clinical, psychological and/or social management of ALS. Examples of relevant clinical management studies for this mechanism include, but are not limited to, the following: studies that address gaps in delivery of care; studies that explore and develop telemedicine for the care of individuals with ALS; psychological interventions in ALS to address the significant mental health issues facing ALS patients and caregivers; nutritional and respiratory interventions; development of novel endpoints for clinical trials; and studies to address the needs of caregivers. The newly funded TREAT ALS™ Clinical Management Grants include:

Orla Hardiman, M.D., Trinity College and Beaumont Hospital, Dublin; Miriam Galvin, Ph.D., Dublin City University, Dublin; Niall Pender, Ph.D., Trinity College and Beaumont Hospital, Dublin; and Tom Burke, Trinity College, Dublin.
Topic: Defining and addressing the complex needs of ALS caregivers
Award: $199,984 over two years

Stephen Selkirk, M.D., Ph.D., and Broderick Flynn, R.N., Louis Stokes Cleveland VA Medical Center, Cleveland.
Topic: Utilizing Telehealth technologies to manage the ALS patient
Award: $58,320 over two years

Emily Plowman, Ph.D., University of Florida, Gainesville, Fla., and Clifton Gooch, M.D., University of South Florida, Tampa, Fla.
Topic: Impact of combined inspiratory/expiratory respiratory training in ALS
Award: $200,000 over two years

Zachary Simmons, M.D. and Andrew Geronimo, Ph.D., The Pennsylvania State University College of Medicine, Hershey, Pa.
Topic: New opportunities for patients with brain-computer interface communication
Award: $197,551 over two years

Full descriptions of the research projects are located here.

The ALS Association’s current call for new Investigator-Initiated Awards and Milton Safenowitz Postdoctoral Fellowship Awards is now closed and in progress.

The ALS Association Funds Five New Grants in Clinical Care Management and Data Collection

ALS Association-Initiated Grants
The ALS Association defined areas of specific focus for research and invited experts in their respective fields to submit proposals. The ALS Association convenes a review board to discuss proposals and makes selections based on the merits of each one. ALS Association-Initiated Grants include:

Robert Miller, M.D., Sutter West Bay Hospitals, ALS Forbes Norris MDA/ALS Research Center, San Francisco.
Topic: Establishing uniform methods of data collection in ALS centers that use Epic software for their electronic health record and documentation
Award: $100,000 over nine months

Overview: Electronic health record (EHR) systems are routinely used at ALS multidisciplinary clinics to document clinical visits. Sadly, important information sits in the unstructured notes that are not easily extractable or harmonizable across the centers. This project does what is needed for the disease instead of the medical centers, by creating a constant flow of information from patients, providers, labs and other resources to a single data center, which could provide valuable insights into our knowledge of ALS.

Epic is one of the leaders among EHR vendors worldwide. According to the investigators recent survey, most U.S. ALS centers use Epic as their institutional EHR system. Epic has advanced functionality that allows designing, creating and deploying custom forms that allow data to be shared across institutional boundaries. With this knowledge, the investigators have worked with Epic to design ALS-specific forms for ALS clinics. Epic has agreed to work with them to build and deploy these to all of their installations. This project will allow multiple ALS clinics to capture bedside information throughout the entire disease course for any patient attending the clinic. Information can be exported from Epic databases, aggregated and used to learn about disease outcomes and to provide information to clinics and patients that can improve care. In this project, the three centers California Pacific Medical Center (CPMC), University of Minnesota, and Massachusetts General Hospital will begin to develop methodology, regulatory controls, operating procedures and guidelines for deployment to additional centers going forward.

TREAT ALS™ Clinical Management Grants
The aim of the TREAT ALS™ Clinical Management Grant Program is to improve care of people living with ALS with a focus on clinical, psychological and/or social management of ALS. Examples of relevant clinical management studies for this mechanism include, but are not limited to: studies that address gaps in delivery of care; studies that explore and develop telemedicine for the care of individuals with ALS; psychological interventions in ALS to address the significant mental health issues facing ALS patients and caregivers; nutritional and respiratory interventions; development of novel endpoints for clinical trials; and studies to address the needs of caregivers. The newly funded TREAT ALS™ Clinical Management Grants include:

Orla Hardiman, M.D., Trinity College and Beaumont Hospital, Dublin; Miriam Galvin, Ph.D., Dublin City University, Dublin; Niall Pender, Ph.D., Trinity College and Beaumont Hospital, Dublin; and Tom Burke, Trinity College, Dublin.
Topic: Defining and addressing the complex needs of ALS caregivers
Award: $199,984 over two years

Overview: Thinking and behavioural changes occur in ALS and clinically these changes overlap with a dementia affecting the frontal lobes of the brain (Fronto-temporal Dementia). According to many population-based studies, cognitive difficulties and behavior changes occur in up to 40-50 percent of patients with ALS. The most commonly reported behavioural change in ALS patients is apathy, present in up to 60 percent of patients.

Thinking and behavior changes are significant factors that contribute to caregiver burden, and there is evolving evidence that caregivers’ psychological status may also influence the mental and physical outcome of patients. However, the presence of cognitive/behavioral changes in ALS patients is often under-recognized by healthcare professionals and the burden of care associated with these changes is not addressed.

The overall purpose of this study is to systematically investigate the consequences of cognitive and behavioral effects on caregiver burden in ALS. Investigators will achieve this by (1) interrogating the components of our existing datasets to identify the impact of cognitive and behavioral change on caregiver burden and (2) designing a study to provide a rational approach to enable self-management of burden and develop guidelines for health care professionals to recognize cognitive and behavioral change in ALS and the associated burden for caregivers.

Stephen Selkirk, M.D., Ph.D., and Broderick Flynn, R.N., Louis Stokes Cleveland VA Medical Center, Cleveland.
Topic: Utilizing Telehealth technologies to manage the ALS patient
Award: $58,320 over two years

Overview: Telemedicine refers to the use of telecommunication systems to support health care delivery. It is a perpetually evolving application of healthcare, mirroring advances in technology that allows patients to interact with healthcare providers with a “Skype-like” connection. This modality of healthcare delivery is well suited to ALS patients. First, it is well established that ALS patients who receive care from an ALS specialty clinic will survive longer, receive more appropriate care and have a higher quality of life. However, the number of ALS specialty clinics is limited and often are not in close proximity for many patients with ALS preventing access to this high level of care. Telemedicine would allow any patient, regardless of their location, access to ALS specialty centers. Secondly, as ALS progresses patients become disabled making travel to a providers’ locations difficult – if not impossible. The ability to interact with care providers without travel from home would allow for continued care and decreased burden on the patient and his/her family as the disease progresses.

Emily Plowman, Ph.D., University of Florida, Gainesville, Fla., and Clifton Gooch, M.D., University of South Florida, Tampa, Fla.
Topic: Impact of combined inspiratory/expiratory respiratory training in ALS
Award: $200,000 over two years

Overview: Breathing and swallowing impairments are highly prevalent in ALS and together account for 92 percent of disease mortality. Currently, no treatments significantly prolong these vital functions, and there exists an urgent need for the development of effective therapies in ALS. Preliminary data from the investigators laboratory indicate that a program of expiratory strength training had a positive effect on expiratory force generating abilities, airway protection and swallowing in ALS, and inspiratory strength training has been identified as a significant predictor of survival (Pinto, 2015). To date, no group has examined the impact of a potentially synergistic combined inspiratory/expiratory respiratory training program to target the vital functions of breathing, airway clearance and swallowing in ALS. The goal of this proposal is to extend their earlier works and investigate the effects of a 12-week combined inspiratory and expiratory strength-training program in early affected ALS patients. The hypothesis is that respiratory training will actively engage breathing and swallowing musculature and prolong the vital functions of breathing, airway protection and swallowing. Results will provide valuable insight into the potential role of respiratory training to improve the care of persons with ALS and address a critical gap in treatment delivery in ALS.

Zachary Simmons, M.D. and Andrew Geronimo, Ph.D., The Pennsylvania State University College of Medicine, Hershey, Pa.
Topic: New opportunities for patients with brain-computer interface communication
Award: $197,551 over two years

Overview: Multidisciplinary clinics prolong survival and improve quality of life for individuals with ALS. The promise of telemedicine is to expand the reach of these centers by making virtual medical care more accessible and at lower cost. With the recent establishment of an ALS telemedicine program at Penn State Hershey Medical Center, individuals who were previously underserved may experience real-time, face-to-face care through a secure web-based video interface. Those engaging in virtual clinic visits, however, may possess verbal communication limitations that prohibit effective communication via conventional means. This proposal is an expansion of the Hershey ALS telemedicine program, so that training, monitoring and communication with augmentative and alternative communication technologies can be facilitated through a telehealth interface. Rather than indirect communication from the patient through a caregiver, a telemedicine system with integrated eye tracking and brain-computer interface capabilities will facilitate direct interaction between the patient and the clinical care team. Furthermore, remote monitoring of these systems will allow for therapists to judge the efficacy of these devices, remotely adjust parameter settings and recommend alternative solutions outside of normal clinic visits.

For the press release click here.