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Taking part in research is one way to help accelerate the development of treatments for ataxia. Some people like playing an active role in improving our understanding of ataxia by participating in clinical trials and other research studies. However, participating in research is a deeply personal choice. There are a Read More…
The Coordination of Rare Diseases at Sanford (CoRDS) coordinates the advancement of research into 7,000 rare diseases via data sharing and study recruitment. CoRDS works with advocacy groups such as the National Ataxia Foundation, individuals who have a diagnosis of any form of Ataxia, and researchers who are studying various Read More…
There are two main categories of human clinical trials: (1) observational studies, and 2) interventional studies. Both types of clinical studies are essential to developing new therapies for rare diseases like Ataxia. There are multiple trials taking place right now for Ataxia. In this PrepRARE article, learn a little more Read More…
DISCLAIMER: The information provided in this article is for informational use only. NAF encourages all readers to consult with their primary care provider, neurologist, or other healthcare provider about any advice mentioned. Deciding whether to donate cerebral spinal fluid (CSF) is a very personal, but impactful decision. In the video Read More…
If you’ve been involved in research or read about research studies involving human participants, you’ve likely heard the terms “inclusion and exclusion criteria.” While the definitions of inclusion criteria and exclusion criteria seem fairly self-explanatory, it is important to understand some background on why these criteria are utilized. Let’s start Read More…
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Let’s chat about Clinical Trial Readiness with a focus on Ataxia. Clinical trials ensure that treatments are safe and effective before they gain approval for widespread use in humans. Clinical trials test new treatments and therapies including: new drugs, different use for an already approved drug, medical devices, new treatment/therapy Read More…
What does a placebo mean? A placebo is a simulated substance that has no therapeutic effect or active ingredients. Often, a placebo looks, feels, and tastes like other therapies being tested in the clinical trial. What is the placebo effect, and why is it important? https://www.youtube.com/watch?v=5RhG_ySxhDA Why are placebo-controlled trials Read More…
Guest Author: Amber Trzeciak, Cadent Therapeutics Clinical trial phases can be a confusing concept to understand. The purpose of clinical trials is to determine how a drug or device (intervention) will interact with a human being. Trials are regulated by our governmental agency the FDA (US Food and Drug Administration). Read More…
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