Participating in Other Research

Clinical Studies & Trials

Participating in Other Research

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: Active, Not Recruiting

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: fopregistry.org

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: ifopa.org/biobank

Status: Active, recruiting

Study on Effects of COVID-19 on Endocrine Disorders

Research Sponsor: 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 FOPstudy@ucsf.edu. 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: 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 edward.hsiao@ucsf.edu to learn more about the study.

Status: 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 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

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