In blog 2, we talked about going to www.clinicaltrials.gov to see what kind of research is going on for sickle cell disease.
Now, we want to make sure you know how to actually get involved in sickle cell disease research, if you’re interested!
We’ve put together a how-to guide in this blog on how to find clinical trials for you. We know some people may find the first step to actually finding a trial challenging!
The good news is, there are a few online databases that list every trial that’s recruiting in the United States. Sort of like a “Google search” but just for clinical trials.
The bad news? Well, they can be confusing to use! That’s what we’re here for. Check out our how-to guide on how to make the most of these search engines. And be sure to ask your doctor about any sickle cell disease trials in your area too.
For extra reading on how to get involved in sickle cell disease research:
How to Search for Sickle Cell Disease Clinical Trials:
- Visit www.clinicaltrials.gov or www.centerwatch.com/clinical-trials/.
- Type in “Sickle Cell Disease” in the Conditions, Diseases, or Medical Condition field.
Other helpful search terms, depending on your disease:
- “Sickle Cell Disease”
- “SCD” (just make sure it says “Sickle Cell Disease” in the title or search)
- “Sickle Cell Anemia” or “Sickle Cell Anemia in Kids”
- “Sickle Cell Crisis”
- “Sickle Cell Trait”
If you want to get more specific with your disease, here are more detailed search terms that may help:
- “Sickle Cell Nephropathy”
- “Sickle Cell Retinopathy”
- “Sickle Cell Stroke”
- “Sickle Cell Acute Chest Syndrome”
- “Sickle Cell Cholelithiasis”
- “Sickle Cell Leg Ulcers”
- “Sickle Cell Priapism”
- “Sickle Cell Spleen Crisis”
- “Sickle Cell Without Crisis”
- “Hemoglobin S Disease” or “Hemoglobin SS Disease”
- “HbS Disease” or “Hb SS Disease”
- Enter or select your location, such as city, state, and country in the relevant fields.
- Choose how far you’re willing to travel, by choosing distance under the drop-down field for distance. Your screen should look like this by the time you have made your selections for either site:
- Hit “Search.”
- Look over all your options. The ones near the top are the ones that most closely match what you’re looking for. Just be sure that the Status is Recruiting, if you’re looking to join something right now. Otherwise, Not Yet Recruiting might be more your speed. If you see Active, Not Recruiting, that means the trial is underway and they have the people they need.
Inclusion criteria are characteristics that someone is required to have in order to participate in a study. Exclusion criteria are characteristics that disqualify someone from being able to participate in a study.
- You can use the “Filters” section on the left side of your screen to further narrow down your search results as it relates to you.
- You can select “File” and “Print” from the top left of your browser. This will print the list out
and you can show your doctor to discuss.
- If you want to contact the clinical trial directly, look for “Contact and Locations” or “Contact
Research Team” buttons on the top right of the screen as below:
- You did it! You completed a search for Sickle Cell Disease Trials. Be sure to “Bookmark” or
“Favorite” these websites so you can check back in the future to see if anything new pops up. Extra tip: The CenterWatch website has an easy way to sign up to receive notifications. If a study that interests you pops up: Click on the “Sign up now” button to receive notifications for that study:
Say what? A recap of words used:
- Recruiting: a trial that is looking for people to join right now.
- Not Yet Recruiting: a trial that will be looking for people to join in the future, so check back regularly.
- Active, Not Recruiting: a trial that is underway and they already have all the people they need.
Inclusion Criteria: The characteristics that someone is required to have in order to participate in a study.
Exclusion Criteria: The characteristics that disqualify someone from being able to participate in a study.