survey

While neurologists are frustrated with the treatments for amyotrophic lateral sclerosis (ALS) now on the market, they rapidly adopt new therapies that may delay disease progression for use among their patients with the neurodegenerative disorder. That’s according to Spherix Global Insights, a company providing market research and business…

More than half of the people with amyotrophic lateral sclerosis (ALS) responding to a survey were dissatisfied with their quality of life and pessimistic about their future. The U.S.-based survey was conducted by ALS News Today. Nevertheless, the vast majority of respondents reported to be satisfied with their…

Most unpaid caregivers in the U.K. have not had any breaks from their caregiving role during the COVID-19 pandemic, with nearly three-quarters reporting feeling exhausted, stressed, and anxious, according to a survey of more than 2,800 caregivers conducted by Carers UK. During the pandemic, carers lost a mean…

More than half of the people with rare diseases and their caregivers, asked in a survey, were undecided or less than willing to be vaccinated for COVID-19 if a vaccine was approved under emergency use authorization instead of the routine process, the EveryLife Foundation for Rare Disease reports. These findings…

The Muscular Dystrophy Association (MDA) is urging people with amyotrophic lateral sclerosis (ALS) to take part in a new study that’s seeking to track disease progression through a mobile app. In addition to ALS, the ongoing study is enrolling adults with primary lateral sclerosis (PLS) or related neuron…

As anyone affected by a rare disease knows, treating the illness while trying to go about everyday life is an expensive undertaking.  But exactly how expensive — in terms of direct and indirect costs across rare disease populations — might still come as a surprise: almost…

Editor’s note: The ALS News Today team is providing in-depth coverage of the 2021 MDA Virtual Clinical and Scientific Conference, March 15–18. Go here to read the latest stories from the conference. Respiratory symptoms in people with amyotrophic lateral sclerosis (ALS) significantly affect their ability to independently perform daily tasks,…

People with rare disorders have a worse healthcare experience than those affected by chronic diseases, according to the results of an international survey conducted by Eurordis-Rare Diseases Europe. Indeed, rare disease patients overall give their healthcare experience a medium-low rating, of 2.5 on a scale of 1 to 5,…

The first wave of COVID-19 in Europe severely disrupted access to care and raised stress and anxiety in people with rare diseases, negatively affecting their health and well-being, according to a survey conducted by Eurordis-Rare Diseases Europe. “People living with rare diseases in Europe have found themselves caught as collateral…

Accessing and understanding insurance coverage, and paying for medical treatments and services top the list of stressors that burden people with amyotrophic lateral sclerosis (ALS) in the United States, a survey of patients and caregivers reports. Ten percent of its 444 respondents — in 1 in every 10 —…