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EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. ALS Radcliff Study : Multi-disciplinary focus We are looking for Individuals with early symptom who have been diagnosed with Possible, Probable or Definite ALS Our IRB approved study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology. By participating in this study, you will contribute to a growing large ALS dataset and further improve current assessment & treatment of individuals diagnosed with ALS using physiological signals and objective measurements. Your connection to ALS I am interested to participate in * Required The Speech Study to advance drug trials The Radcliff : Multi-disciplinary Study The ALS Gene Carrier Study Are you enrolled in PREVENT ALS Study (DIALS Network at MGH/WashU or ALS Families Study at Columbia University)? Yes No Don't Know For more information click here . Do you use Assistive Devices ? For Walking For Breathing CPAP Other Cane Rollator Walker Wheelchair Other What is your shoe size? Women Men What is your t-shirt size? Country Submit What is the purpose of the study? This is a fully remote, observational, exploratory, non-controlled, non-drug study in people with Amyotrophic Lateral Sclerosis (ALS). The study seeks to explore whether specific digital measures gathered at home warrant further investigation as tools for monitoring clinical function and disease progression in ALS. This study is completely remote - all assessments will be completed in your home. The necessary equipment for the study will be sent to your house, which includes: Spirometers for breathing tests Feet sensors for walking analysis and an android smartphone EverythingALS mobile App will make it easy for you to navigate the study. The format consists of weekly ALS-FRS-R & proctors sessions with a research co-ordinator. Your total participation will be 9-12 months Any gender, age 18 Years and older Diagnosed with possible, probable, or definite ALS by a neurologist Able to walk without help (without using a cane or walker. Ankle-foot orthotics (AFO) are allowed, as long as the study sole inserts can be accommodated within their shoes. Are comfortable going up and down stairs without help safely. Use of hand railing is permitted and encouraged Exclusion Criteria: Inability to read, understand, and speak English Use of a ventilator, or non-invasive mechanical ventilation for more than 16 hours daily The full list of requirements for the study can be discussed with the study coordinator What is the eligibility criteria? What procedures will I participate in if I enroll in the study? How long will I be in the Study? Protocol Number: 2022-09-RAD-PI42 | Sponsor: Peter Cohen Foundation Contact Us Email: rad@everythingals.org

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. LOGIN > Click here to Register or Login if you are in the study You can help advance ALS Research Join one, or more, of our current studies ALS Austen Study: Advancing the Diagnosis and Prognosis of ALS from Speech Our IRB approved study is motivated by the need for early detection and improved prognostic accuracy of ALS using advanced computational technology and speech which includes both audio and video data. Click to Join ALS Radcliff Study: Multi-disciplinary focus A new IRB approved multidisciplinary ALS study is focused on walking, breathing function, and speech analysis to make progress towards a digital biomarker. You can track your own data through EverythingALS portal and App. Click to Join ALS Gene Carrier Study: Families Fight Together - Everyone can fight together with EverythingALS This study is focused on early detection of motor and speech changes using emerging digital technologies to support families affected by ALS and FTD. Click to Join EverythingALS Radcliff Study Introduction Why Join the Study? Hear from Brian Andre and Vivian Rojas If you are interested in the study, please contact us Your connection to ALS I am interested to participate in * Required The Speech Study to advance drug trials The Radcliff : Multi-disciplinary Study The ALS Gene Carrier Study Are you enrolled in PREVENT ALS Study (DIALS Network at MGH/WashU or ALS Families Study at Columbia University)? Yes No Don't Know For more information click here . Do you use Assistive Devices ? For Walking For Breathing CPAP Other Cane Rollator Walker Wheelchair Other What is your Shoe size? What is your T-shirt size? Women Men Country Submit

EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. Everything ALS Request to Delete Account and Personal Data If you wish to delete your account and remove your personal data from our system, please follow these simple steps: Fill Out the Form: Provide the necessary details in the form. Submit the Form: Once you’ve completed the form, submit it to initiate the deletion process. Upon receiving your request, our team will promptly process it. We will permanently delete all your data from our records.Please note that this action is irreversible, and you will no longer be able to access your account or any associated data after deletion. Delete Account Form First Name Last Name Email that you used to create an Account on the App Mobile Number Reason for Account Deletion Submit

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EverythingALS is a patient-focused non-profit, part of Peter Cohen Foundation (PCF) a 501(3)c organization. Our mission is to support efforts to care for ALS patients and work to find a cure by creating a platform for direct engagement with patients, caregivers, advocates, and researchers. The ALS Gene Carrier Study Study of Asymptomatic Carriers We are looking for individuals who are Gene Carriers of ALS and currently Asymptomatic We are developing a study motivated by the need for monitoring and early detection of motor and speech changes using advanced computational technology . By participating in this study, you will contribute to further improve current assessment of individuals with the Asymptomatic ALS gene using physiological signals and objective measurements. Our goal is to sensitively detect early motor and speech changes in ALS using a multimodal monitoring approach. We will measure gait and balance, speech, and upper limb function using motor function sensors. This study is fully remote and can be performed in the comfort of your home. We are currently in the trial design phase. If you would like to participate in this study in the near future, please fill out the interest form below. Your connection to ALS I am interested to participate in The Speech Study to advance drug trials (All) The Radcliff : Multi-disciplinary Study (pALS Only) The ALS Gene Carrier Study (Not diagnosed) Are you enrolled in DIALS (Prevent ALS) study? * Required Yes No Don't know Do you use Assistive Devices ? For Walking For Breathing CPAP Other Cane Rollator Walker Wheelchair Other What is your shoe size? What is your t-shirt size? Women Men Country Submit

All Posts Care Resources Treatments & Protocols Search madhavi35 Oct 14, 2021 3 min EverythingALS Launches “Stories and Innovation in ALS” Podcast PRESS RELEASE Hosts Lisa Pecoraro Deegan and McFinn Lovere Interview Top Researchers, Clinicians, Patients, and Caregivers for an Inside... 135 views 0 comments Post not marked as liked indunavar Mar 29, 2021 2 min EverythingALS Selected to Present at the American Academy of Neurology Annual Meeting, April 17-22 April 16, 2021 (Los Altos, CA) – EverythingALS, a California nonprofit dedicated to bringing technological innovations and data science... 278 views 0 comments Post not marked as liked

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