I Have Sickle Cell Disease — Why Should I Join a Clinical Trial?
- Neuro-Behavioral Clinical Research
- Dec 16
- 3 min read
Living with Sickle Cell Disease (SCD) often means managing pain, fatigue, and complications that
can affect every part of daily life. Many people with SCD rely on medications to prevent crises, manage symptoms, and stay out of the hospital. But the truth is, the medications we have today exist because people with SCD participated in clinical trials.
If you’ve ever wondered whether joining a medication-based clinical trial is worth considering, you’re not alone.
What Is a Medication Clinical Trial?
A medication clinical trial studies new drugs or new ways of using existing medications to treat Sickle Cell Disease. These trials may focus on:
Reducing the frequency or severity of pain crises
Preventing complications like organ damage or infections
Improving energy levels and daily functioning
Finding treatments with fewer side effects
Unlike gene therapy, these trials involve medications taken by mouth, injection, or infusion, similar to many treatments already used in SCD care.
Why Medication Trials Matter for Sickle Cell Disease
Sickle Cell Disease has limited treatment options compared to other chronic conditions. Many current medications don’t work the same way for everyone, and some come with challenging side effects.
Medication trials help researchers:
Develop safer, more effective drugs
Improve treatments for people who don’t respond well to existing options
Discover combinations or dosing strategies that better fit real-life SCD care
Every medication approved for SCD today was once tested in a clinical trial with people who asked the same questions you might be asking now.
Potential Benefits of Joining a Medication Trial
1. Access to New Medications
Clinical trials may give you access to investigational medications before they become widely available. These treatments are designed to improve symptoms or reduce complications.
2. Close Medical Monitoring
Participants in medication trials are often monitored more frequently than in routine care. This means regular check-ins, lab tests, and early attention to side effects or concerns.
3. Contributing to Better Treatment Options
By participating, you help researchers understand how medications work in real people living with SCD — not just in labs or on paper.
4. Supporting the SCD Community
Your participation may help expand treatment options for children and adults with SCD who are still relying on limited or outdated therapies.
Addressing Common Concerns
“What if the medication doesn’t work for me?”
Not every medication works for every person — that’s exactly why these trials exist. Your experience helps researchers learn who benefits most and how to improve treatment.
“Will I have to stop my current medications?”
Some trials allow you to continue standard treatments. Others may require changes. This is clearly explained before you enroll, and you always have the right to say no.
“Are medication trials safe?”
Medication trials follow strict safety rules. Studies begin only after extensive laboratory testing, and participants are closely monitored throughout the trial.
“Can I leave the trial if I change my mind?”
Yes. Participation is completely voluntary. You can withdraw at any time without affecting your regular medical care.
Important Questions to Ask Before Joining
Before enrolling in a medication clinical trial, consider asking:
What medication is being studied and how does it work?
What are the possible side effects?
How long does the study last?
Will there be costs, or will expenses be covered?
How often will I need to visit the clinic?
A responsible research team will answer these questions clearly and honestly.
Making the Choice That’s Right for You
Joining a medication clinical trial is a personal decision. It’s not about pressure or obligation — it’s about information, options, and choice.
For some people, a trial represents hope for better symptom control. For others, it’s a way to contribute to progress for the SCD community. And for some, it may not be the right time — and that’s okay too.
Final Thoughts
Medications remain a cornerstone of Sickle Cell Disease care. Clinical trials are how better, safer, and more effective treatments are discovered.
By considering a medication-based clinical trial, you’re not just exploring a new option for yourself — you’re helping move SCD treatment forward in a way that benefits the entire community.
Your experience matters.
Your health matters.
And your choice always comes first.
Neuro-Behavioral Clinical Research is currently conducting a PAID clinical study on Sickle Cell Disease. For more information see:
or call 330-493-1118
