Hosted by the NEALS Ventilation Committee. Open to all attendees wishing to share perspective on reviewing the evidence and experience had with different ventilatory tools for patients with ALS, along with any experience had with regulators regarding options for patients.
The NEALS Ventilation Sub-Committee is hosting a Ventilation Symposium, in order to discuss and develop evidence- and consensus- based guidelines on the appropriate options for people with ALS to have their ventilation needs met. Specifically, we are concerned with evaluating practice habits of a variety of clinics in our network. There have been some centers that have been audited for high rates of orders for advanced ventilators (e.g. Trilogy) 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. Please join us to offer your perspective on reviewing the evidence and experience you have with different ventilatory tools for patients with ALS, and any experience you may have had with regulators regarding options for patients.