Are You Interested in Participating in a Clinical Trial?
After many years of successful basic and translational research, we have begun an important and exciting era of clinical trials for FOP. Clinical trials designed to advance the understanding of FOP and potential treatments are taking place around the world. The IFOPA is dedicated to providing you with information on clinical trials. There are a number of ways you can stay informed:
- Learn more about clinical trials on this website. See our list of active clinical trials for FOP. Check back regularly for updates.
- Participate in the FOP Registry. The registry will give you the option to indicate whether you want to be contacted about research opportunities.
- “Like” the IFOPA Facebook page and watch for announcements
- Visit the www.clinicaltrials.gov website, which is a comprehensive list of clinical studies taking place around the world. Search for FOP clinical trials using the keyword “fibrodysplasia.”
Why Participate in Clinical Trials?
Clinical trials give patients an opportunity to play a more active role in their own health care, gain access to potential treatments before they are widely available, and help others by contributing to medical research. There are also risks to clinical trials. Before enrolling in a clinical trial it is important to understand the potential risks and benefits, and to discuss your options with your doctors and your family.
Please let us know if we at the IFOPA can help you get answers to your questions about a clinical trial so that you can make an informed decision about whether to participate. We are committed to sharing up-to-date information and facilitating dialogue with appropriate experts to enable you to make an informed choice. You can reach us by email at email@example.com or by phone (407) 365-4194.
For general information about clinical trials, please visit the National Institutes of Health site on clinical trials.
The Center for Information and Study on Clinical Research Participation (CISCRP) is an independent non-profit organization dedicated to educating and informing the public and patients about clinical research: www.ciscrp.org/education-center/
Open Clinical Trials
The most up-to-date place to find information on clinical studies and trials that are active in the United States is www.clinicaltrials.gov. This page lists all active clinical trials for individuals living with FOP.
The Fibrodysplasia Ossificans Progressiva (FOP) Connection Registry
A Natural History Study of Fibrodysplasia Ossificans Progressiva (FOP)
Active, Not Recruiting
An Efficacy and Safety Study of Palovarotene to Treat Preosseous Flare-ups in FOP Subjects
Intervention: Drug: Palovarotene; Drug: Placebo
An Open-Label Extension Study of Palovarotene to Treat Preosseous Flare-ups in FOP Subjects
Intervention: Drug: Palovarotene dose level 1; Drug: Palovarotene dose level 2; Drug: Palovarotene dose level 3
An Open-Label Extension Study of Palovarotene to Prevent Heterotopic Ossification in FOP Subjects in France
Invervention: Drug: Palovarotene dose level 1; Drug: Palovarotene dose level 2
In-Home Evaluation of Episodic Administration of Palovarotene in Fibrodysplasia Ossificans Progressiva (FOP) Subjects
Intervention: Drug: Palovarotene
Urine Sample Collection From FOP Patients