Philadelphia Amyotrophic Lateral Sclerosis (PALS) Cohort Respiratory Study

The goal of the PALS Cohort study is to understand if certain characteristics of ALS specific to you may help predict the risk of developing problems with breathing and whether they determine how well breathing function will be over time. The study will be enrolling people who have been diagnosed with ALS in the past 5 months prior to enrolling in the study. If you consent to participate in this study, clinical data relevant to your diagnosis, vital signs, breathings test results and use of non-invasive ventilation or NIV (breathing equipment) and tracheostomy placement will be collected at 5 clinic visits over about 12 months. A secondary goal, through an optional sub-study, is to gather patient concerns, expectations and knowledge regarding early respiratory care in ALS. This will only include about a 30min recorded, transcribed and de-identified phone call.