Decoding Clinical Trials

Find a clinical trial that works for you!, managed by the U.S. National Library of Medicine, includes 439,599 research studies in 50 states and 221 countries. Many of those are specific for Duchenne muscular dystrophy. When you type the condition into the search bar it shows 359 Duchenne-specific studies, some of which have already been completed.

A curated table of clinical trials is available on our site and updated periodically, but it’s important to be able to conduct your own search, read and decipher the deeper content of each particular study to see if you or your child is eligible.

Searching for a Trial

The first thing you’ll see when you visit is three search bars. Enter ‘Duchenne’ and select it from the drop-down menu. You can use one or all of these fields for a more specific results page, but we recommend starting with just Duchenne muscular dystrophy before narrowing your search. If you are looking for something closer to where you live, you can filter the results based on state, city, and distance.

You can apply more filters on the left-hand side of the screen once you hit enter.

These include eligibility criteria, like age and sex, study type, study results, and recruitment (whether it is recruiting, completed, withdrawn, or terminated).

Hit the + button to expand each filter and select options.

We recommend using the criteria: Interventional, Not yet recruiting, and Recruiting.

Understanding the Results

A quick glance at each row of the results page can tell you important information about the trial without having to click into it. To show or hide more or less information, click on ‘Show/Hide Columns’ as indicated by the red arrow below. We suggest starting off with at least the columns shown in the image below: Status, Study Title, Condition, Interventions, Phase, Sponsor, Age, and Locations.

Selecting a specific record under ‘Study Title’ will open a new page with more details on that specific study. When reading a record, the place to start is on the upper right-hand corner of the clinical trial page. It looks like this:

The first thing to note is the identifier number, which starts with “NCT” followed by 8 unique digits (in the above example, NCT05185622). This is the clinical trials identifier or NCT number, a specific identifier that will link directly to that clinical trial. You may want to write it down, as it can be used as a reference number later.

This section will also confirm the recruitment status, that the study is either about to start recruiting or actively recruiting. It will also display the date of any changes that have been made to the study since its initial posting. If a trial has stopped recruiting or halted for any reason, this box will be red as shown below:

Finally, clicking on ‘Contacts and Locations’ will jump you to a section listing where the trial is being held, with more detailed information on whether a particular site is still active, along with contact information for the study. When filtering by location, keep in mind that many studies may cover the cost of travel, so you don’t have to limit your search to just nearby locations.

Eligibility Criteria

Note: If you clicked on ‘Contacts and Locations’ you will need to manually scroll back UP to see detailed ‘Eligibility Criteria’ – don’t get lost here!

The ‘Eligibility Criteria’ section will provide more guidance on study acceptance requirements – amenable exons for skipping, ambulatory requirements, age, and much more. Note that sometimes the requirements can be linked to specific test results, so read carefully.

Try the Beta Version

Some people maybe find the upcoming release of the site more informative. Be aware that the site is currently still in beta (under development and not necessarily perfect yet).

It can be accessed here:

Or from the link on a study page here:

Watch this video for a step-by-step walkthrough on how to use the beta clinical trials site.

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