2021 POH Patient Symposium Recording
https://drive.google.com/file/d/1ffZszRuW2blIU9v-NaGcGWA_eF58HzJA/view?usp=sharing
Diagnostic and Mutational Spectrum of Progressive Osseous Heteroplasia and Other Forms of GNAS-Based Heterotopic Bone.
https://drive.google.com/file/d/11eOv2SXO_5OD8UnqrYaRSTdkTraLbfH8/view?usp=sharing
The Path to a Clinical Trial
https://drive.google.com/file/d/1y18SUxCuXqcjBhiEOBGRkqG7IXsvvij-/view?usp=sharing
Contacts for additional information about Progressive Osseous Heteroplasia:
For basic research questions:
Eileen M. Shore, PhD Professor,
Departments of Orthopaedic Surgery and Genetics
Perelman School of Medicine
University of Pennsylvania
309A Stemmler Hall 3450 Hamilton Walk
Philadelphia, PA 19104-6081
phone: 215-898-2330
fax: 215-573-2133
email: [email protected]
For clinical questions:
Frederick S. Kaplan, MD,
Isaac & Rose Nassau Professor of Orthopaedic Molecular Medicine
Chief, Division of Orthopaedic Molecular Medicine
Perelman School of Medicine
University of Pennsylvania
c/o Department of Orthopaedic Surgery
Penn Musculoskeletal Center – Suite 600
3737 Market Street
Philadelphia, PA 19104-6081
phone: 215-294-9145
fax: 215-222-8854
email: [email protected]
Information on current clinical trials is posted on the Internet at www.clinicaltrials.gov. All studies receiving U.S. Government funding, and some supported by private industry, are posted on this government web site.
For information about clinical trials being conducted at the NIH Clinical Center in
Bethesda, MD, contact the NIH Patient Recruitment Office:
Tollfree: (800) 411-1222
TTY: (866) 411-1010
Email: [email protected]
Some current clinical trials also are posted on the following page on the NORD website:
https://rarediseases.org/for-patients-and-families/information-resources/news-patient-
recruitment/
For information about clinical trials sponsored by private sources, contact:
www.centerwatch.com
For information about clinical trials conducted in Europe, contact:
https://www.clinicaltrialsregister.eu/
Supporting Organizations
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Phone: (301) 251-4925
Toll-free: (888) 205-2311
Website: http://rarediseases.info.nih.gov/GARD/
NIH/National Institute of Arthritis and Musculoskeletal and Skin Diseases
Information Clearinghouse
One AMS Circle
Bethesda, MD 20892-3675 USA
Phone: (301) 495-4484
Toll-free: (877) 226-4267
Email: [email protected]
Website: http://www.niams.nih.gov/
Progressive Osseous Heteroplasia Association
1460 Bolingbrook Drive
Columbus, OH 43228 USA
Phone: (614) 887-7642
Email: [email protected]
Website: http://www.pohdisease.org
TEXTBOOKS
Kaplan FS, Pignolo RJ, Al Mukaddam M, and Shore EM. Genetic Disorders of
Heterotopic Ossification: Fibrodysplasia Ossificans Progressiva and Progressive Osseous
Heteroplasia. In: Primer on the Metabolic Bone Diseases and Disorders of Mineral
Metabolism, Ninth Edition. John Bilezikian, Editor. ASBMR, Washington, DC.
2019;Chapter 112:1719-1729.
Shore, EM and Kaplan FS. Extraskeletal Bone Formation. Pediatric Bone, Second Edition.
F.H. Glorieux, J.M. Pettifor, H. Juppner, Editors, Academic Press. 2011; Chapter 30; 821-
840.
Shore EM, Kaplan FS. Progressive Osseous Heteroplasia. NORD Guide to Rare Disorders.
Lippincott Williams & Wilkins. Philadelphia, PA. 2003; 203-204.
