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Items: 1 to 20 of 102

1.

Assessing disease experience across the life span for individuals with osteogenesis imperfecta: challenges and opportunities for patient-reported outcomes (PROs) measurement: a pilot study.

Tosi LL, Floor MK, Dollar CM, Gillies AP; Members of the Brittle Bone Disease Consortium, Hart TS, Cuthbertson DD, Sutton VR, Krischer JP.

Orphanet J Rare Dis. 2019 Jan 29;14(1):23. doi: 10.1186/s13023-019-1004-x.

2.

Incorporating the patient perspective in the study of rare bone disease: insights from the osteogenesis imperfecta community.

Swezey T, Reeve BB, Hart TS, Floor MK, Dollar CM, Gillies AP, Tosi LL.

Osteoporos Int. 2019 Feb;30(2):507-511. doi: 10.1007/s00198-018-4690-7. Epub 2018 Sep 6.

3.

Initial report of the osteogenesis imperfecta adult natural history initiative.

Tosi LL, Oetgen ME, Floor MK, Huber MB, Kennelly AM, McCarter RJ, Rak MF, Simmonds BJ, Simpson MD, Tucker CA, McKiernan FE.

Orphanet J Rare Dis. 2015 Nov 14;10:146. doi: 10.1186/s13023-015-0362-2.

4.

Mortality and morbidity in patients with osteogenesis imperfecta in Denmark.

Folkestad L.

Dan Med J. 2018 Apr;65(4). pii: B5454. Review.

PMID:
29619932
5.

Health-related quality of life of children and adolescents with osteogenesis imperfecta: a cross-sectional study using PedsQL™.

Vanz AP, van de Sande Lee J, Pinheiro B, Zambrano M, Brizola E, da Rocha NS, Schwartz IVD, de Souza Pires MM, Félix TM.

BMC Pediatr. 2018 Mar 2;18(1):95. doi: 10.1186/s12887-018-1077-z.

6.

The Feasibility and Validity of PROMIS: A Novel Measure of Quality of Life among Children with Cleft Lip and Palate.

Ranganathan K, Shapiro D, Carlozzi NE, Baker M, Vercler CJ, Kasten SJ, Warschausky SA, Buchman SR, Waljee JF.

Plast Reconstr Surg. 2016 Oct;138(4):675e-81e. doi: 10.1097/PRS.0000000000002541.

PMID:
27673538
7.

Oral health-related quality of life in children and adolescents with osteogenesis imperfecta: cross-sectional study.

Najirad M, Ma MS, Rauch F, Sutton VR, Lee B, Retrouvey JM; Members of the BBD, Esfandiari S.

Orphanet J Rare Dis. 2018 Oct 25;13(1):187. doi: 10.1186/s13023-018-0935-y.

8.

Pain and quality of life of children and adolescents with osteogenesis imperfecta over a bisphosphonate treatment cycle.

Tsimicalis A, Boitor M, Ferland CE, Rauch F, Le May S, Carrier JI, Ngheim T, Bilodeau C.

Eur J Pediatr. 2018 Jun;177(6):891-902. doi: 10.1007/s00431-018-3127-9. Epub 2018 Apr 11.

PMID:
29637375
9.

Health-Related Quality of Life in Adults with Osteogenesis Imperfecta.

Hald JD, Folkestad L, Harsløf T, Brixen K, Langdahl B.

Calcif Tissue Int. 2017 Nov;101(5):473-478. doi: 10.1007/s00223-017-0301-4. Epub 2017 Jul 4.

PMID:
28676897
10.

Involving Families with Osteogenesis Imperfecta in Health Service Research: Joint Development of the OI/ECE Questionnaire.

Dogba MJ, Dahan-Oliel N, Snider L, Glorieux FH, Durigova M, Palomo T, Cordey M, Bédard MH, Bedos C, Rauch F.

PLoS One. 2016 Jan 22;11(1):e0147654. doi: 10.1371/journal.pone.0147654. eCollection 2016.

11.
12.

Patient-Reported Outcomes Measurement Information System instruments: outperforming traditional quality of life measures in patients with back and neck pain.

Tishelman JC, Vasquez-Montes D, Jevotovsky DS, Stekas N, Moses MJ, Karia RJ, Errico T, Buckland AJ, Protopsaltis TS.

J Neurosurg Spine. 2019 Feb 1:1-6. doi: 10.3171/2018.10.SPINE18571. [Epub ahead of print]

PMID:
30717038
13.

Fracture Rates and Fracture Sites in Patients With Osteogenesis Imperfecta: A Nationwide Register-Based Cohort Study.

Folkestad L, Hald JD, Ersbøll AK, Gram J, Hermann AP, Langdahl B, Abrahamsen B, Brixen K.

J Bone Miner Res. 2017 Jan;32(1):125-134. doi: 10.1002/jbmr.2920. Epub 2016 Aug 29.

14.

Gait characteristics and functional assessment of children with type I osteogenesis imperfecta.

Graf A, Hassani S, Krzak J, Caudill A, Flanagan A, Bajorunaite R, Harris G, Smith P.

J Orthop Res. 2009 Sep;27(9):1182-90. doi: 10.1002/jor.20871.

15.

Musculoskeletal functional outcomes in children with osteogenesis imperfecta: associations with disease severity and pamidronate therapy.

Sousa T, Bompadre V, White KK.

J Pediatr Orthop. 2014 Jan;34(1):118-22. doi: 10.1097/BPO.0b013e3182a006a0.

PMID:
23863411
16.

Disablement Model and Health-Related Quality of Life Classification for Patient-Reported Outcomes Measurement Information System (PROMIS) Instruments.

Snyder Valier AR, Bacon CEW, Lam KC.

J Athl Train. 2018 Dec;53(12):1206-1213. doi: 10.4085/1062-6050-331-17. Epub 2019 Jan 3.

PMID:
30605370
17.

Pain Experiences of Children and Adolescents With Osteogenesis Imperfecta: An Integrative Review.

Nghiem T, Louli J, Treherne SC, Anderson CE, Tsimicalis A, Lalloo C, Stinson JN, Thorstad K.

Clin J Pain. 2017 Mar;33(3):271-280. doi: 10.1097/AJP.0000000000000395. Review.

PMID:
27258996
18.

Quality of life in osteogenesis imperfecta: A mixed-methods systematic review.

Dahan-Oliel N, Oliel S, Tsimicalis A, Montpetit K, Rauch F, Dogba MJ.

Am J Med Genet A. 2016 Jan;170A(1):62-76. doi: 10.1002/ajmg.a.37377. Epub 2015 Sep 14. Review.

PMID:
26365089
19.

A cross-sectional multicenter study of osteogenesis imperfecta in North America - results from the linked clinical research centers.

Patel RM, Nagamani SC, Cuthbertson D, Campeau PM, Krischer JP, Shapiro JR, Steiner RD, Smith PA, Bober MB, Byers PH, Pepin M, Durigova M, Glorieux FH, Rauch F, Lee BH, Hart T, Sutton VR.

Clin Genet. 2015 Feb;87(2):133-40. doi: 10.1111/cge.12409. Epub 2014 May 30.

20.

The case for an international patient-reported outcomes measurement information system (PROMIS®) initiative.

Alonso J, Bartlett SJ, Rose M, Aaronson NK, Chaplin JE, Efficace F, Leplège A, Lu A, Tulsky DS, Raat H, Ravens-Sieberer U, Revicki D, Terwee CB, Valderas JM, Cella D, Forrest CB; PROMIS International Group.

Health Qual Life Outcomes. 2013 Dec 20;11:210. doi: 10.1186/1477-7525-11-210.

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