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In clinical research, scientists design studies to learn more about diseases and answer questions about new treatment options. Interventional clinical trials are used to better understand the safety and effectiveness of a new drug or medical device. Observational clinical trials help researchers learn more about how diseases develop over time Read More…
Getting a new medicine approved for use in the United States involves a detailed process overseen by the U.S. Food and Drug Administration (FDA). This process is called the New Drug Application (NDA). NDAs are crucial for making sure medicines are safe and effective before they’re available to the public. Read More…
Have you ever wondered what goes on behind the scenes to bring a new drug to market? The process can take a long time. This is because of the many steps required. This is particularly true once human clinical trial participants are involved. In this article, we will explore the Read More…
Have you ever wanted to volunteer as an Ataxia research participant? Have you been unsure about how to find out about ongoing research studies? Have you wanted to help researchers better understand Ataxia? One answer to all three of these questions is a patient registry. A patient registry collects specific Read More…
Many people with Ataxia are interested in participating in clinical research, but are not sure where to start. It can be tricky to know where to start looking for information. Our Participate in Ataxia Research webpage is a good place to start. However, we often receive questions about how to Read More…
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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