Participate in Research

Investigators Currently Searching for Patients

Enrolling in a study is a personal decision that may have risks or benefits. The Fibrous Dysplasia Foundation provides this page as a resource for patients and families. Inclusion of a study on this webpage is not an endorsement or recommendation by the Fibrous Dysplasia Foundation. Researchers with IRB-reviewed or Ethics Committee-approved studies may request to be listed via email to info@fibrousdysplasia.org.

Harvard Medical School and the National Institutes of Health Seek to Understand the Causes of Pain in FD/MAS Patients

Researchers are trying to recruit study participants for a research study that aims to understand the causes of pain in Fibrous Dysplasia/McCune Albright Syndrome (FD/MAS) patients. Adolescent and adult patients diagnosed with (FD/MAS with or without pain) can participate in the research study. Participants will make up to two visits (approximately 2-3 hours long) to the Boston Children’s Hospital. Compensation, travel accommodations and reimbursements are available. You can read more about the study here. For more information, please contact the research group at jaymin.upadhyay@childrens.harvard.edu or by phone at 917-736-1541.

FD/MAS Patient Registry Seeks FD patients with and without MAS. 

Patients and caregivers can enroll in this IRB-approved study. The Registry allows them to fill out surveys and share medical data in a secure repository. Information on this ongoing research project launched by the FDF can be found at www.fdmasregistry.org

Study Contacts:

Tovah Burstein, Study Coordinator and Program Assistant, registry@fibrousdysplasia.org
Kiran Murty, Primary Investigator and Board Member of the FDF, PI.Registry@fibrousdysplasia.org

University of Hartford Study Seeks patients ages 18 to 21 with a physical disability

Patients can participate in this study on resilience in young individuals with a physical disability resulting from a growth disorder, ages 18 to 21.  Grant consent and access study questionnaires via:  this link

Study Contacts:

Brigit Clancy, Doctoral Candidate at University of Hartford, brigit.clancy@gmail.com or (860) 205-5094

 

UConn Study Seeking Cherubism Patients 

Information about ongoing cherubism research at the University of Connecticut and how you can participate by contributing saliva or tissue. The goal is to identify additional mutations and additional genes that can lead to cherubism. This knowledge will help to better understand the molecular pathways of cherubism and what regulates the initiation and maintenance of cherubic lesions. http://reichenbergerlab.uchc.edu/cherubism/about_cherubism.html 

Study contact:

Ernst Reichenberger, PhD (Assistant Professor)
University of Connecticut Health Center (UCHC)
Center for Restorative Medicine and Skeletal Development
Department of Oral Rehabilitation, Biomaterials and Skeletal Development

263 Farmington Avenue
Farmington, CT 06030-3705
Tel: 860-679-2062
Fax: 860-679-2910
Email: reichenberger@uchc.edu

 

Loyola Study Seeking Patients with Facial Differences

Information about ongoing research at Loyola University and how you can participate by participating in interviews. Learn more by clicking here.

Study contact:

Amanda Konradi, PhD
Loyola University Maryland
Department of Sociology

Tel: (410) 935-6998
Email: akonradi@loyola.edu

 

Screening and Natural History of Patients With Polyostotic Fibrous Dysplasia and McCune-Albright Syndrome

The natural history of this disease is poorly described and there are no clearly-defined systemic therapies for the bone disease. The purpose of this study is to define the natural history of the disease with or without treatment.

Study contacts:

Lori C Guthrie, R.N. (301) 594-0844 guthriel@mail.nih.gov
Alison M Boyce, M.D. (301) 443-2700 alison.boyce@nih.gov
National Institutes of Health
National Institute of Dental and Craniofacial Research (NIDCR)

 

 

RUDY Study UK Seeks Patients with Rare Bone Diseases

Rudy is a study in rare diseases of the bones, joints and blood vessels. Headed up by a research team at the University of Oxford, Rudy aims to transform clinical care for participants through patient driven research.

Study contact:

Kassim Javaid
admin@rudystudy.org
07775 541615 / 01865 223407
https://research.ndorms.ox.ac.uk/rudy/library

 

Additional Investigators May Be Seeking Patients

The federal government sponsors the database ClinicalTrials.gov to help people locate scientists studying a wide range of medical conditions and diseases.

If you would like to contribute to the accumulation of scientific knowledge about Fibrous Dysplasia, McCune Albright Syndrome, or Cherubism, which will result in better diagnosis and treatment of people with your condition, you should check it out. Follow the 3 steps below to access the appropriate regions of ClinicalTrials.gov.

1. Type the following URL into your browser, or click here: http://clinicaltrials.gov/ct2/search .
2. You will see a box below the following statement in the middle of your screen: “Enter a word or phrase, such as the name of a medical condition or intervention.” Type in “cherubism,” “craniofacial abnormalities,” “Fibrous dysplasia,” or “McCune Albright Syndrome.” Take care to spell the search term correctly. Then push the SEARCH button.
3. A new web page will open, listing studies that are ongoing and currently recruiting participants as well as those that are completed. Scroll through them and click on ongoing studies to find out further information.