Participating in Other Research

Clinical Studies & Trials

Participating in Other Research

FOP Registry

Research Sponsor: IFOPA 

Research Description: The FOP Registry was established to advance our understanding of FOP, enhance clinical care and facilitate clinical trial designs. The FOP Registry is the largest and most in-depth collection of FOP medical and clinical information. The FOP Registry is also a resource for practitioners to publish and help elevate awareness about this rare disorder. It is governed by an advisory board of renowned physicians with direct experience treating FOP.

Who Can Participate: Anyone living with FOP is eligible to participate by entering information every six months. It's simple, secure and participant anonymity is always assured.

Clinical Trial Link/Contact Information:

Status: Enrollment is Open

Understanding the FOP Journey Through Existing Medical Data

Research Sponsor: IFOPA 

Research Description: The International FOP Association (IFOPA) is conducting an observational research study to support researchers who want to learn more about the clinical outcomes of FOP using existing medical data (e.g. electronic medical records, insurance claims data, etc). Participants simply provide the IFOPA some basic contact information which alleviates the need for participants to complete lengthy questionnaires and shortens the timeline of the study. The IFOPA then works with third-party software companies whose software tools create a unique de-identified code (token) for each FOP participant. Future research studies will then use that token to pull participants’ medical information securely and confidentially from electronic health records and claims data, all while keeping the participants’ identities private. This research is supported by Regeneron Pharmaceuticals and IPSEN.

Who Can Participate:  This study is only open to those living in the United States, and meets one of the following criteria:
1. Anyone diagnosed with FOP
2. Next of kin of anyone diagnosed with FOP who passed in the timeframe January 1, 2017, to present

Clinical Trial Link/Contact Information:

  • If you or a living child are diagnosed with FOP, click here
  • If you are the next of kin of anyone diagnosed with FOP who passed in the timeframe January 1, 2017, to present, click here

Questions? Email [email protected]

Status: Enrollment is Open

FOP Biobank

Research Sponsor: IFOPA

Research Description: The IFOPA Biobank is a centralized collection of tissue and blood donated by people with FOP, their families, and anyone else, to be used for FOP research by qualified scientists around the world. Additionally, the IFOPA Biobank collects clinical information from people with FOP to enable research into factors that affect treatment and outcomes. By sharing portions of the samples and the anonymous health information with many different labs around the world, the IFOPA Biobank will maximize the impact from each donation.

Who Can Participate: Anyone over the age of 4 can donate. Samples are needed from FOP patients, family members and non-related volunteers. The FOP Biobank also needs repeat donors, so please consider donating multiple samples.

Clinical Trial Link/Contact Information:

Status: Active, recruiting

Influence of the Gut Microbiome on FOP

Research Sponsor: UCSF

Research Description: A study from the Hsiao Lab at UCSF aims to learn more about how the bacteria that normally live in the gut (also known as the microbiome) can affect endocrine diseases such as FOP. Recent research indicates that the environment (which includes gut bacteria) can have strong effects on how and when a condition occurs. Since the microbiome is influenced by what you eat, we are collecting stool and saliva samples to analyze genetics and DNA from microbes. Comparisons will be made from unaffected siblings living in the same household. Participation in this study can be done entirely from home and does not involve clinic visits.

What Does This Study Involve? 
1. Medical review video conference with study staff
2. Answering a survey about gastrointestinal (GI) symptoms
3. Filling out a questionnaire about your eating habits, appetite and food preferences
4. We collect some of your gut microbes! This involves two saliva samples and one stool sample

Who Can Participate:
Fibrodysplasia ossificans progressiva (FOP) patients who live in the United States, have not taken antibiotics in at least one month, are not currently enrolled in an investigational drug study, and are between the ages of 8 and 30.

Clinical Trial Link/Contact Information: Interested families should contact Hayley Wallace at [email protected] to learn more about the study. 

Status: Recruiting

Study on Effects of COVID-19 on Endocrine Disorders

Research Sponsor: University of California, San Francisco (UCSF)

Research Description: The goal of this project is to understand COVID-19 in patients with endocrine disorders. It also seeks to learn more about how COVID-19 and its potential treatments and therapies may affect management of endocrine disorders.

Who Can Participate: Patients with endocrine disorders who have experienced any of the following:

  • Symptoms consistent with COVID-19 (fever, cough, runny nose, upper respiratory infection, etc.)
  • Had exposure to a patient with COVID-19 diagnosis or symptoms
  • Undergone a COVID-19 test (regardless of result)
  • Or tested positive for COVID-19

Clinical Trial Link/Contact Information: If you are interested in participating in this study or learning more about it, you can reach out to us at [email protected]. For further questions about this study, contact Dr. Edward Hsiao and Evelyn Brady at (857) 259-9037.

Status: Recruiting

Genetic Modifiers of FOP

Research Sponsor: University of California, San Francisco (UCSF)

Research Description: The Hsiao lab at UCSF is interested in understanding how genes affect the FOP mutations in ACVR1, and modify the severity of the FOP presentation. The UCSF research team is collecting medical history information and saliva or blood DNA, if available. Participation in this study does not involve on-site clinic visits, and blood collections are not required.

Who Can Participate: Contact study investigator for more information

Clinical Trial Link/Contact Information: Interested families should contact Dr. Hsiao directly at [email protected] to learn more about the study.

Status: Recruiting

FOP-PROMPT Development Study

Research Sponsor: IFOPA

Research Description: The IFOPA is launching a study to evaluate the utility of the Fibrodysplasia Ossificans Progressiva-foP RepOrted syMPtoms Tool (FOP-PROMPT) in future clinical trials for FOP. FOP-PROMPT is a patient reported-outcome (PRO) questionnaire designed to evaluate signs, symptoms and impacts of FOP and FOP flare-ups among individuals 8 years of age and older in the FOP community. The development of this questionnaire is for future use in the FOP Registry and clinical research and will be communicated to regulatory authorities regarding its use to support product approval and labeling.

Who Can Participate: The IFOPA is looking for participants who have a diagnosis of FOP, can read English, and who are 8 years of age and older.

Clinical Trial Link/Contact Information: Interested participants should complete this short interest form.

Status: Completed

Patient Experience with FOP Flare-Ups

Research Sponsor: Regeneron Pharmaceuticals

Research Description: Modus Outcomes, a scientific research company, is doing an interview study about fibrodysplasia ossificans progressiva (FOP). The study seeks to understand how people living with FOP experience symptoms, as well as how FOP impacts daily life. One main goal of the interview is to understand the symptoms and impacts of flare-ups. To be eligible, participants must have experienced a flare-up in the past year. Another main goal of the interview is to gather feedback on a patient-reported outcome questionnaire that may be used in a clinical trial; the questionnaire is intended to capture the patient experience with flare-ups but feedback from people living with FOP is needed to make sure the questionnaire is accurately capturing the flare-up experience. No medical treatment will be provided as part of this study. Eligible participants who participate in the interviews will receive an honorarium for taking part.

Who Can Participate: Modus Outcomes is looking for people aged 18 and older living with FOP who have experienced a flare-up in the past year, and based in the United States or United Kingdom, to participate in interviews for this study. If you are interested in this study, a Modus Outcomes researcher will ask you a few more questions to determine your eligibility. If you are eligible, you will be invited to participate in an online telephone or video interview lasting about 60 minutes. In order for Modus Outcomes to collect feedback on the questionnaire described above, you will need to be able to view a screen they share with you via the Teams app on a smartphone, computer, or tablet. Patients currently participating in a clinical trial are not eligible.

Clinical Trial Link/Contact Information: If you have a diagnosis of FOP and are interested in participating or would like more information about the study, you can reach out to the research coordinator, Jessica Baldasaro via email at [email protected] or via phone at +1 (603)-443-0891.

Status: Completed

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