Initial report of the osteogenesis imperfecta adult natural history initiative

Orphanet Journal of Rare Diseases

Volumn 10, Issue 1, 2015, Pages

  Tosi, Laura L ^a   Oetgen, Matthew E ^a   Floor, Marianne K ^a   Huber, Mary Beth ^b   Kennelly, Ann M ^a   McCarter, Robert J ^a   Rak, Melanie F ^c   Simmonds, Barbara J ^b   Simpson, Melissa D ^d   Tucker, Carole A ^e   McKiernan, Fergus E ^f  

^a CHILDREN'S NATIONAL MEDICAL CENTER   (United States)

^b Osteogenesis Imperfecta Foundation   (United States)

^c REHABILITATION INSTITUTE OF CHICAGO   (United States)

^d MORRIS ANIMAL FOUNDATION   (United States)

^e TEMPLE UNIVERSITY   (United States)

^f MARSHFIELD CLINIC   (United States)

Author keywords

Adult; Childhood onset conditions; Osteogenesis imperfecta; Patient centered outcomes; PROMIS

Indexed keywords

ADULT; ADULTHOOD; AGED; ARTICLE; CLINICAL FEATURE; CONTROLLED STUDY; DISEASE COURSE; DISEASE SEVERITY; EAR DISEASE; ENDOCRINE DISEASE; FEMALE; GASTROINTESTINAL SYMPTOM; HEALTH STATUS; HUMAN; INTERNET; LUNG DISEASE; MAJOR CLINICAL STUDY; MALE; MEDICAL INFORMATION SYSTEM; MEDICAL SOCIETY; MENTAL HEALTH; MUSCULOSKELETAL DISEASE; OSTEOGENESIS IMPERFECTA; OUTCOME ASSESSMENT; PREVALENCE; QUALITY OF LIFE; SELF REPORT; SUPPORT GROUP; ADOLESCENT; MIDDLE AGED; QUESTIONNAIRE; RESEARCH; VERY ELDERLY; YOUNG ADULT;

ADOLESCENT; ADULT; AGED; AGED, 80 AND OVER; FEMALE; HUMANS; INTERNET; MALE; MIDDLE AGED; OSTEOGENESIS IMPERFECTA; QUALITY OF LIFE; RESEARCH REPORT; SURVEYS AND QUESTIONNAIRES; YOUNG ADULT;

EID: 84946935279     PISSN: None     EISSN: 17501172     Source Type: Journal    
DOI: 10.1186/s13023-015-0362-2     Document Type: Article

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