1: Boers M, Kirwan JR, Wells G, Beaton D Gossec L, D’Agostino MA, et al. Developing Core Outcome Measurement Sets for Clinical Trials: OMERACT Filter 2.0. J Clin Epidemiol. 2014 Jul;67(7):745-53. doi: 10.1016/j.jclinepi.2013.11.013.
2: Boers M, Brooks P, Strand CV, Tugwell P. The OMERACT Filter for Outcome Measures in Rheumatology. J Rheumatol. 1998 Feb;25(2):198-9.
3: Sinha I, Jones L, Smyth RL, Williamson PR. A systematic review of studies that aim to determine
which outcomes to measure in clinical trials in children. PLoS medicine 2008;5(4):e96. doi: 10.1371/journal.pmed.0050096
4: Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. The Lancet: Volume 374, ISSUE 9683, P86-89, July 04, 2009. doi 10.1016/S0140-6736(09)60329-9
5: Forlino A, Marini JC. Osteogenesis imperfecta. Lancet. 2016;387(10028):1657‐1671. doi:10.1016/S0140-6736(15)00728-X.
6: Kivirikko KI. Collagens and their abnormalities in a wide spectrum of diseases. Ann Med 1993;25:113-126.
7: Byers PH, Steiner RD. Osteogenesis imperfecta. Annu Rev Med 1992;43:269-282.
8: Prockop DJ. Mutations that alter the primary structure of type I collagen. The perils of a system for generating large structures by the principle of nucleated growth. J Biol Chem 1990;265:15349-15352.
9; Colver A. A shared framework and language for childhood disability. Dev Med Child Neurol.2005; 47: 780–4.
10: Boulkedid R, Abdoul H, Loustau M, Sibony O, Alberti C. Using and reporting the Delphi method for selecting healthcare quality indicators; a systematic review Wright JM ed PloS One. 2011;6(6)e20476,
11: Biggane AM, Williamson PR, Ravaud P, Young B. Participating in core outcome set development via Delphi surveys: qualitative interviews provide pointers to inform guidance. BMJ Open. 2019;9(11):e032338.. doi:10.1136/bmjopen-2019-032338
12: ICHOM: Standard Set. https://www.ichom.org/standard-sets/#methodology. Accessed 11 of November 2019.
13: World Health Organization (WHO): Classifications: International Classification of Functioning, Disability and Health (ICF). https://www.who.int/classifications/icf/en. Accessed 19 of November 2019.
14: Healthmeasures: PROMIS® (Patient-Reported Outcomes Measurement Information System) is a set of person-centered measures that evaluates and monitors physical, mental, and social health in adults and children. It can be used with the general population and with individuals living with chronic conditions. https://www.healthmeasures.net/explore-measurement-systems/promis. Accessed 4 of December 2019.
15: PedsQL: Measurement Model for the Pediatric Quality of Life InventoryTM. https://www.pedsql.org/about_pedsql.html Accessed on 19 of November.
16: Matcham F, Norton S, Steer S, Hotopf M. Usefulness of the SF-36 Health Survey in screening for depressive and anxiety disorders in rheumatoid arthritis. BMC Musculoskelet Disord. 2016; 17: 224. doi: 10.1186/s12891-016-1083-y
17: Lewiecki EM, Lane NE. Common mistakes in the clinical use of bone mineral density testing. Nat Clin Pract Rheumatol. 2008 Dec; 4(12): 667–674. doi: 10.1038/ncprheum0928
18: Smits-Engelsman B, Klerks M, Kirby A. Beighton score: a valid measure for generalized hypermobility in children. J Pediatr. 2011 Jan; 158(1): 119, 123.
19: van Brussel M, Helders PMP. The 30-Second Walk Test (30sWT) Norms for Children. Pediatric Physical Therapy: October 2009 - Volume 21 - Issue 3 - p 244 doi: 10.1097/01.pep.0000359326.12040.0b
20: Graham HK, Harvey A, Roda J, Nattrass GR, Pirpiris M. The Functional Mobility Scale (FMS). Journal of Pediatric Orthopaedics: September/October 2004 - Volume 24 - Issue 5 - p 514-520.
21: Sunnaas skypehus HF: Short introduction to Sunnaas ADL-Index. https://www.sunnaas.no/Documents/Sunnaas%20ADL-index%20short%20introduction%20-%20ENG.pdf Accessed on 15 November 2019.
22: Le may S, Ballard A, Khadra C, Gouin S, Plint A, Villeneuve E, et al. Comparison of the psychometric properties of 3 pain scales used in the pediatric emergency department: Visual Analogue Scale, Faces Pain Scale-Revised, and Colour Analogue Scale. Pain. PAIN: 2018;159(8):1508-1517. doi:10.1097/j.pain.0000000000001236
23: Tsimicalis A, Denis-Larocque G, Michalovic A, Lepage C, Williams K, Yao TR, et al. The psychosocial experience of individuals living with osteogenesis imperfecta: a mixed-methods systematic review. Qual Life Res 2016 Aug;25(8):1877-96. doi: 10.1007/s11136-016-1247-0.