People with multiple sclerosis (MS) are encouraged to complete a survey aimed at understanding the experiences and expectations of those with a chronic illness who have either participated in a clinical trial or may in the future.
The questionnaire was created by Kayentis, an electronic solutions company, in collaboration with a patient advocate, according to a webpage posted by the Multiple Sclerosis Association of America (MSAA).
Survey results are expected to be released early next year.
The identity of survey participants will neither be disclosed nor passed on to third parties, and all data will be securely held. The survey is expected to take a few minutes to complete, and asks questions about participants’ age, employment status, and chronic condition. MS is one of the options within the category “Neurology.”
It also asks participants their opinion of what would best make for a positive clinical trial experience. Possible answers include clear and simple information, strong support, user-friendly electronic devices, the chance to contribute to how the trial is conducted, not having to travel too far to a clinic site, not having to spend too much time at a clinic site, and help with trial participation costs.
Some questions are related to the COVID-19 pandemic, which has made trial participation more difficult due to social distancing and other preventive measures, and has affected how trials are evolving. For example, in terms of study location, the survey asks whether participants would prefer an at-home or site-based trial, or a partly remote study.
Questions regarding this survey may be emailed to Estelle Haenel at [email protected]
Clinical trials are part of research and are at the heart of all medical advances. Their goal is to determine whether a device, procedure, or pharmaceutical therapy works and is safe. These studies also may test new ways of using existing treatments, other aspects of care, or simply record daily life with a disease over time — an observational study that can provide important data for researchers and clinicians.
But trials need volunteers.
Clinical studies have defined requirements, called eligibility criteria, outlining who can participate. These are based on characteristics that can include age, gender, the disorder’s type and stage, the patient’s previous treatment history, and the presence of other medical conditions.
A number of MS trials are taking place at universities and medical centers internationally. Here is a list of current MS studies on the website of the U.S. National Library of Medicine.
Globally, it is estimated that more than 2.3 million people are living with MS, including some 1 million individuals in the U.S.
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