Fop Registry Ifopa International Fibrodysplasia Ossificans
A global, patient-reported registry has been established to characterize the course of disease and track clinical outcomes in patients with fibrodysplasia ossificans progressiva (FOP), an ultra-rare genetic condition of progressive heterotopic ossification (HO) that... Here, we present baseline phenotypes on 299 patients (median age 21 years; range 0.1 to 78 years) from 54 countries based on aggregate data from the International FOP Association (IFOPA) Global Registry (the "FOP... The mean current age of the patients is 23.7 years (range, 0.1 to 78 years). Baseline characteristics are presented for FOP diagnosis, HO, flare-ups and precedent events, system-based prevalent symptomatology, encounters with medical and dental care providers, Patient Reported Outcomes Measurement Information System (PROMIS) Global Health Scale scores, physical... Correlations of PROMIS Global Health scores with HO burden and physical function are calculated. Associations of joint mobility with PROMIS Global Health scores, physical function, and use of aids, assistive devices, and adaptations are summarized.
Overall, the FOP Registry database contains a broad sample of the global FOP patient population, providing a useful tool for expanding knowledge of FOP, designing clinical trials and facilitating evidence-based decisions about the optimal... Keywords: Fibrodysplasia ossificans progressiva; Heterotopic ossification; Patient registry; Physical functioning; Quality of life. Copyright © 2020 Elsevier Inc. All rights reserved. 1520 Clay St, Ste H2, North Kansas City, MO 64116North Kansas City, Missouri, United States The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is a voluntary, non-profit organization that supports those afflicted by the rare genetic condition Fibrodysplasia Ossificans Progressiva and their families by instilling hope worldwide while searching for...
Their mission is to eliminate FOP as a health concern through education, research, advocacy, and support. Fibrodysplasia ossificans progressiva (FOP) is a very rare inherited connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as... The ICC is an autonomous and independent group of 21 internationally recognized clinical experts (MDs & Dentists) in FOP from 14 nations and 5 continents. In June 2017, the International Clinical Council (ICC) on FOP was established to consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP. on best practices for the care of individuals with FOP. on the design and conduct of interventional trials in FOP patients(Dec.
2, 2020 – Editorial from the ICC regarding clinical trials) from time-to-time the FOP Clinical Guidelines.
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A Global, Patient-reported Registry Has Been Established To Characterize The
A global, patient-reported registry has been established to characterize the course of disease and track clinical outcomes in patients with fibrodysplasia ossificans progressiva (FOP), an ultra-rare genetic condition of progressive heterotopic ossification (HO) that... Here, we present baseline phenotypes on 299 patients (median age 21 years; range 0.1 to 78 years) from 54 countries based on aggre...
Overall, The FOP Registry Database Contains A Broad Sample Of
Overall, the FOP Registry database contains a broad sample of the global FOP patient population, providing a useful tool for expanding knowledge of FOP, designing clinical trials and facilitating evidence-based decisions about the optimal... Keywords: Fibrodysplasia ossificans progressiva; Heterotopic ossification; Patient registry; Physical functioning; Quality of life. Copyright © 2020 Elsevier ...
Their Mission Is To Eliminate FOP As A Health Concern
Their mission is to eliminate FOP as a health concern through education, research, advocacy, and support. Fibrodysplasia ossificans progressiva (FOP) is a very rare inherited connective tissue disorder characterized by the abnormal development of bone in areas of the body where bone is not normally present (heterotopic ossification), such as... The ICC is an autonomous and independent group of 21 ...
2, 2020 – Editorial From The ICC Regarding Clinical Trials)
2, 2020 – Editorial from the ICC regarding clinical trials) from time-to-time the FOP Clinical Guidelines.
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