17th Annual NEALS Meeting

The 17th Annual Northeast ALS Consortium (NEALS) meeting was held October 2-4, 2018 in Clearwater, Florida. NEALS now has over 100 member sites, including centers in Lebanon, Israel, Mexico, Canada, Australia and Italy, and there were researchers, clinicians and allied health professionals from throughout the country in attendance.

Dr. Terry Heiman-Patterson, Dr. Justin Kwan, Dr. Ossama Khazaal, Sara Feldman, PT, DPT, and Kathleen Hatala, RN, represented the MDA/ALS Center of Hope at Temple University.

The team presented the following posters, click on the link to see a pdf of the:

Physical Therapy Evaluation in the ALS Clinic: A Survey of Clinical Practice Patterns

Measuring the Rate of Decline in Pulmonary Function in ALS from the ALS Nutrition/NIPPV Study Group

Validation of a Staging System in ALS: Comparison of the US and European Populations

The mission of NEALS is to rapidly translate scientific advances into clinical research and new treatments for people with ALS/MND. To this end, they offer a full day of Outcome Measures and Site Management training. As part of the research team here at Temple, Sara Feldman and Kathleen Hatala attended and assisted with the training sessions and attended multiple study specific and committee meetings. It is an excellent setting to discuss issues and share information!

The General Session started the following morning with an update of the past year. Then the presentations started with a Right to Try and Expanded Access discussion lead by James Russell (Lahey) and Jinsy Andrews (Columbia) to inform the audience of the differences and implications. The next session was updates on NEALS trials and included Timothy Miller’s (WashU) update on C9ORF72 Natural History and Biomarkers; Jeremy Shefner (BNI) on ALS Testing Through Home-based Outcome Measures; Brian Waigner (MGH) on the Retigabine study; Shafeeq Ladha (BNI) on the Tocilizumab study; and Jennifer Roggenbuck (OSUMC) on the results of a survey on Genetic Testing Practice at NEALS sites.

The afternoon session was dedicated to the Abstract Platform presentations. These included Emily Plowman (UFla) Best Clinical Screening Tools for Early Detection and Accurate Monitoring of Dysphagia in ALS: Development of the Physiologic Risk Index of Swallowing Impairment; Richard Smith (CNS) Computer Assessment of Speech in a Successful ALS Treatment Trial; Jeremy Shefner (BNI) Use of a Time to Event Strength Measure in a Phase 3 ALS Trial; Stephen Goutman (UMich) High Plasma Levels of Organic Pollutants Negatively Impact Survival in ALS; K Kukulka (UMissouri) on Framing a Palliative Approach to ALS: Eliciting Stakeholder Perspectives on the Realities of Living with ALS; Colin Quinn (UPenn) onInteruser Reliability of the Penn UMN Score in ALS; G Sadri-Vakili (MGH) Cromolyn Sodium Treatment is Neuroprotective and Delays Disease Progression in SOD1G93A Mouse Model of ALS; and L Hochberg on BrainGate Pilot Clinical Trials: Harnessing Motor Cortical Signals for the Control of Communication Devices by People with ALS. The poster session followed.

The next morning session then moved on the Science Update and was chaired by Robert Brown (UMass), Jeffrey Rothstein (Johns Hopkins) and Timothy Miller (WashU). The presentations then started with Bruce Miller (UCSF) discussing ALS and FTD; Orla Hardiman (Trinity, Dublin) adding her thoughts on Cognitive and Behavioral Changes in ALS; then Christopher Coffey (UIowa) presented an innovative statistical design and analysis.

Sara Feldman and Peggy Allred stepped down as the co-chairs of the Physical Therapy Committee which they co-founded in 2012.

When the NEALS meeting ends, the Clinical Learning Institute (CRLI) begins. The goal of the CRLI is to educate and empower people with ALS to become “Research Ambassadors.” Dr. Heiman-Patterson is one of the CRLI instructors and is looking to bring it to the Philadelphia region again.