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Clinical Trials

What is an Investigational New Drug (IND) application?

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…

Patient Registries – What are they and why do they matter?

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…

Screenshot of the ClinicalTrials.Gov search fields.

Finding Clinical Trial Information Using ClinicalTrials.Gov

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…

Woman in clinic drawing blood from a man.

Getting Involved with Ataxia Research

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…

Advancing Research by Joining the CoRDS Patient Registry

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…

The Difference Between Observational and Interventional Studies

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…

All About Cerebral Spinal Fluid (CSF) Donation

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…

How Do I Know if I Qualify for a Research Study

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…

National Ataxia Foundation

Clinical Trial Phases

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…

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