Updates from the NEALS Subcommittees
NEALS has established various subcommittees focused on advancing ALS research and patient care. In an effort to keep our members and subscribers informed about what these focus groups are working on, NEALS will distribute a semi-annual update on committee activities.
Technology in ALS Committee
We are thrilled to announce the creation of a new NEALS committee called “Technology in ALS". The goal of the committee is to build a network of clinicians, researchers and advocates who are engaged in telemedicine, mobile health and assistive technology. Our goal is to leverage technology to enhance ALS care and research. Technological advances are creating novel and unique opportunities to connect with PALS and their families. We are increasingly able to collect patient-reported outcomes (listening to what PALS want to say) and assess how PALS are doing in their own homes and daily life. We are also working on emerging assistive technology that holds the promise to increase PALS’ interaction with the environment and independence. These new capabilities are poised to transform the way we organize ALS clinics and design clinical trials and research projects, leading to increased engagement and participation.
The committee is currently surveying NEALS members to create a database of ongoing technology-related projects, increase awareness and technology adoption among NEALS members, and identify opportunities for collaboration and innovation.
The Bulbar Committee completed a survey identifying specific practice patterns across NEALS sites to determine how patients with bulbar dysfunction are being cared for and assessed at the individual sites. The results of this survey led to a bulbar symposium in April of last year, to begin establishing bulbar provisional guidelines regarding speech, swallowing and communication. A second meeting on the topic was held in Boston in December. It is the hope of the committee that once these guidelines have been established, they may be available to the broader ALS community in an attempt to ensure that all patients with bulbar dysfunction are cared for in a reliable and comprehensive fashion through multi-disciplinary clinics. Ultimately, through evidence-based medicine, a permanent set of bulbar assessment guidelines should follow. The committee is also working on projects concerning instrumentation-based speech assessment, improving advances in clinical swallow evaluations, and offering AAC assistance through a broader ALS patient outreach program.
The Imaging committee met at NEALS annual meeting and discussed exciting data from a number of projects including PBR28 imaging of inflammation in ALS clinical trials (Mass General Hospital) and post-mortem imaging in ALS (Cleveland Clinic). Mass General Hospital also hosted the Neuroimaging International Society in ALS (NiSALS) annual symposium held December 5-6, 2017. Disease spread, neuro-inflammation, and spinal cord imaging were among the topics discussed in this meeting. Paganoni et al. published a paper showing increased inflammation around degenerated upper motor neurons (https://www.sciencedirect.com/science/article/pii/S2213158217302668?via%3Dihub) and Chen et al. published a paper correlating MRI measures with post-mortem tissue pathology to estimate upper motor neuron density in the cortex of living ALS patients (http://pubs.rsna.org/doi/10.1148/radiol.2018162967?url_ver=Z39.88-2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed&).
The NEALS Nutrition committee is currently working on a survey of patient, caregiver and provider recommendations for treatment of constipation in ALS. We will be distributing this using an online survey. The committee is also looking for volunteers to form a sub-committee to work on a Patient-Centered Outcomes Research Institute (PCORI) grant to follow-up a clinical trial of a mobile health application for nutritional counseling. If anyone is interested in participating, please contact Dr. Anne-Marie Wills at firstname.lastname@example.org with the subject line PCORI. The committee is hoping to put together a webinar about the results which led to this study in the near future.
The PEACe Committee is focused on creating an even stronger force of Research Ambassador advocacy in 2018. This includes such things as ongoing communications, increased presence on social media, bringing together active Ambassadors, and increasing the number of Ambassador training courses offered, to include a class in Arizona in July and potentially a class in St. Louis in November. Research Ambassadors continue to be an active voice within their communities, as well as many Ambassadors planning on participating in Advocacy Days in Washington DC in May.
Physical Therapist Committee
The PT committee has 2 ongoing projects, 1) Looking at practice parameters used in the US, and 2) Establishing an International Work Group to look at PT practice around the globe.
Publications in 2017:
Patients with ALS show highly correlated progression rates in left and right limb muscles. Neurology. Apr 2017. Rushton, D, Andres, P, Allred, P, Baloh, R, Svendsen, C
The six-minute walk as a measure of walking capacity in ambulatory individuals with ALS. Archives of Physical Medicine and Rehab. Apr 2017. Sanjak, M, Langford, V, Holsten, S, Rozario, N, Patterson, C, Bravver, E, Bockenek, W, Brooks, B
Fixed dynamometry is more sensitive than vital capacity and ALS rating scale. Muscle and Nerve. Jan 2017. Andres, P, Allred, P, Stephens, H, Proffitt, M, Siener, C, Macklin, E, Haines, T, English, R, Fetterman, K, Kasarkis, E, Florence, J, Simmons, Z, Cudkowicz, M
Clinical Summary: ALS Practice Parameters. PT Now. Jun 2017. Chatto, C, Allred, P
Presentations in 2017:
Respiratory Muscle Unloading to Treat Dyspnea on Exertion in Ambulatory Patients with ALS (AAN) Mohammed Sanjak
Preparing Your Clinic for Research and Participation in Clinical Trials (ALS Association Clinical Conference) Peggy Allred
Computer Access Options for Individuals with ALS (ALS Association Clinical Conference) Sara Feldman
Exercise and ALS – A Discussion of Research and Practical Recommendations (NEALS Webinar) Amy Schwartz Ellrodt
Power Wheelchairs- The Basics and Beyond (NEALS Webinar) Sara Feldman
Making Your Home a Smart Home (Allied Professionals Forum at the International Symposium) Sara Feldman
Posters at NEALS October 2017:
Demonstration of ATLIS and Examples of Clinical and Research Uses - Pat Andres and Peggy Allred
Common Powered Mobility Components for the ALS Population - Sara Feldman and Peggy Allred
Research Nurse Committee
The Research Nurse Committee continues to share information about Radicava and the challenges that go along with getting our patients enrolled and treated. We are working on a survey to shed some light on the nurse’s role(s) in clinic and research and the overlap and financial impact to clinics. We have scheduled a conference call for March of 2018.
Upper Motor Neuron Disease Committee
The Upper Motor Neuron Committee met at the NEALS annual meeting in Florida and discussed several exciting and ongoing research projects including the clinical trial of Ampyra in PLS, which is currently recruiting at the Hospital for Special Surgery, Mass General Hospital, and University of Florida; the collaborative development of upper motor neuron scales at MGH and U Penn; the NEALS national PLS registry which now includes longitudinal data from over 250 PLS patients; the new PLS functional rating scale -PLSFRS lead by Columbia University; and PET imaging neuro-inflammation in people with PLS at Mass General Hospital.
The ventilation Committee has been active reviewing best practices for different devices that provide respiratory assistance for people with ALS, and evaluating practice habits of a variety of clinics in our network. There have been centers that have been audited for high rates of orders for advanced ventilators for patients, and we have investigated how frequently such audits have occurred, and the responses. This has led to a vigorous discussion about the widespread benefits of these devices, and the parameters for their use. We see a clear need for the NEALS Ventilation Committee to write a position statement about the use of advanced ventilators, reviewing current evidence, outcomes, and policies outside the US.
Veterans Affairs (VA) Committee
The VA committee is continuing work on common ALS clinic forms that could be shared by all NEALS (and non-NEALS) VA clinics. The hope is that this will provide the ability to eventually build a database within the VA system.