The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva-Reference-Cited by-同舟云学术

The FOP Connection Registry: Design of an international patient-sponsored registry for Fibrodysplasia Ossificans Progressiva

Published:2018-04 Issue: Volume:109 Page:285-290
ISSN:8756-3282
Container-title:Bone
language:en
Short-container-title:Bone

Author:

Mantick Neal,Bachman Eric,Baujat Genevieve,Brown Matt,Collins Oliver,De Cunto Carmen^ORCID,Delai Patricia,Eekhoff Marelise,zum Felde Roger,Grogan Donna Roy,Haga Nobuhiko,Hsiao Edward,Kantanie Sharon,Kaplan Frederick,Keen Richard,Milosevic Jelena,Morhart Rolf,Pignolo Robert,Qian Xiaobing^ORCID,di Rocco Maja,Scott Christiaan,Sherman Adam,Wallace Marin,Williams Nicky,Zhang Keqin,Bogard Betsy

Publisher

Elsevier BV

Subject

Histology,Physiology,Endocrinology, Diabetes and Metabolism

Reference6 articles.

1. Observations and Recommendations Arising From the Workshop; 13 February 2017, EMA/69716/2017;Patient Registries Workshop,2016

2. FOP Fact Sheet. International Fibrodysplasia Ossificans Progressiva Association.,2017

3. Fibrodysplasia ossificans progressiva;Kaplan;Best Pract. Res. Clin. Rheumatol.,2008

4. The Natural History of Flare-Ups in Fibrodysplasia Ossificans Progressiva (FOP): A Comprehensive Global Assessment;Pignolo;J. Bone Miner. Res.,2016

5. Patient-reported Physical Function Outcome Measure for Adults with Fibrodysplasia Ossificans Progressiva: Intelligent Test Design Based on PROMIS Item Banks;Mattera,2015

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