Welcome to Rett Research Ready™ and
the myRett Trial Finder.

At Rettsyndrome.org, we’re committed to helping you understand what it means to participate in a clinical trial and provide you with personalized research opportunities. We believe in a world without Rett. We invite you to join in the effort to bring new treatments — and ultimately a cure — to our loved ones.

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Ann smiling in the hospital
“It was truly a rewarding, learning experience and we would do it all over if we knew it would help find a treatment. I encourage all parents to look carefully into the trial process, weigh all the factors of concern and move forward toward an experience of a lifetime.”
Jack Kuwik, Dad to Ann
Kayla with family
“One of the biggest takeaways for us participating in a clinical trial was that it gave us HOPE for the future, not only for Kayla, but for the whole Rett community. We don't know what Kayla received in the trial (drug or placebo) but just the fact that she was receiving something that may help her and others down the line was a great source of hope for our whole family.”
Jenny Mosca, Mom to Kayla
Kira smiling with mom
“Our family believes that each second of research is a leap towards a world where those who are diagnosed can live a life free from the barriers Rett syndrome presents. We hope that these studies help to give each child with Rett their best chance at living life to the fullest.”
Patty Mevis, Mom to Kira

What Are the Types of Research?

Research is necessary to discover life-changing new treatments – and eventually a cure – for Rett syndrome. There’s Basic Research, Translational Research, Neuro-habilitation Research, and Clinical Research. Here, we define each type of research, and explain what each contributes to the goal of creating a cure.

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Types of Research

 

How Are New Therapies Developed?

 

How Are New Therapies Developed?

The development of any new drug or therapy for Rett syndrome or any disorder must follow a scientifically rigorous and well-regulated path. This path is designed to make sure that any new therapy is safe and effective when it is made available to the public. The therapy development path is divided into five stages.

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Clinical Trial Phases

Before any new treatment reaches the market, it must be tested in a series of interventional clinical trial phases to determine if it is safe and effective. Each phase must answer a different question about the new therapy. As such, each follows a different study design.

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Clinical Trial Phases

 

Rights and Protections

 

What to Expect: Your Rights & Protections

Choosing to participate in a clinical trial is a big decision for your family. We want to help you understand your rights and protections as a research volunteer. Many regulations and safety measures are in place to ensure your loved one’s health and safety and minimize risks.

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myRett Trial Finder

myRett Trial Finder provides clear and easy-to-search information related to all Rett syndrome clinical trials listed on clinicaltrials.gov. The tool will be updated with new studies as they begin recruiting volunteers. Additionally, Rettsyndrome.org will work with study sponsors to include additional research opportunities, such as neuro-habilitative and observational studies and surveys.

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Programming made possible through the generous support of the following: