Other Research

 

UCSF

Research Study: Influence of the Gut Microbiome on FOP

Research Description: A study from the Hsiao Lab at UCSF aims to learn more about how environmental factors affect the gut in FOP. The UCSF research team is collecting stool and saliva samples and survey data from FOP patients and siblings who live in the same household. Participation in this study does not involve on-site clinic visits nor any invasive testing.

Who Can Participate: The UCSF research team are looking for participants who live in the United States, have not taken antibiotics in the past month, are between the ages of 6 and 30.

Clinical Trial Link/ Contact Information: Interested families should contact Dr. Hsiao directly at edward.hsiao@ucsf.edu to learn more about the study. Status: recruiting.

Status: Recruiting

UCSF

Research Study: Genetic modifiers of FOP

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 edward.hsiao@ucsf.edu to learn more about the study.

Status: Recruiting

IFOPA

Research Study: FOP Registry

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: www.fopregistry.org

Status: Enrollment is Open

Clementia

Research Study: Natural History Study Natural History Studies: Type of observational study designed to look at the course of a disease without any type of treatment or intervention (other than standard of care). Natural history studies help researchers better understand the course of disease over time and what demographic, genetic or environmental factors are associated with the disease progression. (PVO-1A-001)

Research Description: This 3-year, non-interventional, two-part, natural history study Natural History Studies: Type of observational study designed to look at the course of a disease without any type of treatment or intervention (other than standard of care). Natural history studies help researchers better understand the course of disease over time and what demographic, genetic or environmental factors are associated with the disease progression. is designed to gain insight into total body HO, FOP disease progression, the impact of FOP on subjects' physical functioning, and clinical features and biomarkers that may be useful in the diagnosis and monitoring of disease progression. This natural history study Natural History Studies: Type of observational study designed to look at the course of a disease without any type of treatment or intervention (other than standard of care). Natural history studies help researchers better understand the course of disease over time and what demographic, genetic or environmental factors are associated with the disease progression. will also provide important information to inform the design of subsequent interventional trials.

Who Can Participate: All inspaniduals with classic FOP (R206H mutation) up to the age of 65.

Clinical Trial Link/ Contact Information: Clinicaltrials.gov

Status: Active, not recruiting

IFOPA

Research Study: FOP Biobank

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: https://www.ifopa.org/biobank

Status: Active, recruiting

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