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 use external databases to find ataxia research opportunities – including ClinicalTrials.gov. We have made this guide to help you learn how to use the search tools on ClinicalTrials.gov to find Ataxia-specific information.
ClinicalTrials.gov is an online database of clinical research studies from all around the world. Much like how a library catalog will have a list of books with key details about each book, a clinical research database has a list of clinical trials and key details about each trial. But to find the information you are looking for, you need to learn how to search the database correctly. You can find a step-by-step guide on how to use ClinicalTrials.Gov in the video below:
The information you find on ClinicalTrials.Gov is a starting point to get involved in clinical research. Once you have found a trial you are interested in joining, please talk to your neurologist or other healthcare professional about the possible risks and benefits. They can help you determine if this study would be a good fit for you.
It is also important to note that ClinicalTrials.Gov is only one of many clinical research databases. Since ClinicalTrials.Gov is supported by the U.S. government, many of the trials on the website are based in the United States. Other governments around the world have their own clinical research databases, including:
- Health Canada Clinical Trials Database
- European Union Clinical Trials Information System
- Australian New Zealand Clinical Trials Registry
Oftentimes clinical trials will have entries on multiple clinical research databases. This will depend on where patients are being recruited for the study. For example, a clinical trial recruiting patients from the United States and Canada would likely have entries on ClinicalTrials.Gov and the Health Canada Clinical Trials Database, but not on the databases for the European Union, Australia, or New Zealand.
You can learn more about clinical trial registries from other countries through the WHO Primary Registry Network.