Weinstein LS, Shenker A, Gejman PV, Merino MJ, Friedman E, Spiegel AM. Activating mutations of the stimulatory G protein in the McCune–Albright syndrome. N Engl J Med. 1991;325(24):1688–95.
Article
CAS
Google Scholar
Lichtenstein L. Polyostotic fibrous dysplasia. Arch Surg. 1938;36(5):874–98.
Article
Google Scholar
Boyce AM, Florenzano P, De Castro L, Collins MT. Fibrous Dysplasia/McCune-Albright syndrome. In: Adam MP, Ardinger HH, Pagon RA, Wallace SE, Bean LJH, Stephens K, Amemiya A, editors. GeneReviews®. Seattle: University of Washington; 2018.
Google Scholar
Albright F, Butler AM, Hampton AO, Smith P. Syndrome characterized by osteitis fibrosa disseminata, areas of pigmentation and endocrine dysfunction, with precocious puberty in females. N Engl J Med. 1937;216(17):727–46.
Article
Google Scholar
Javaid MK, Boyce A, Appelman-Dijkstra N, Ong J, Defabianis P, Offiah A, et al. Best practice management guidelines for fibrous dysplasia/McCune-Albright syndrome: a consensus statement from the FD/MAS international consortium. Orphanet J Rare Dis. 2019;14(1):139.
Article
Google Scholar
Boyce AM, Turner A, Watts L, Forestier-Zhang L, Underhill A, Pinedo-Villanueva R, et al. Improving patient outcomes in fibrous dysplasia/McCune-Albright syndrome: an international multidisciplinary workshop to inform an international partnership. Arch Osteoporos. 2017;12(1):21.
Article
CAS
Google Scholar
Majoor BCJ, Appelman-Dijkstra NM, Fiocco M, van de Sande MAJ, Dijkstra PDS, Hamdy NAT. Outcome of long-term bisphosphonate therapy in McCune-Albright syndrome and polyostotic fibrous dysplasia. J Bone Miner Res. 2017;32(2):264–76.
Article
CAS
Google Scholar
Boyce AM, Kelly MH, Brillante BA, Kushner H, Wientroub S, Riminucci M, et al. A randomized, double blind, placebo-controlled trial of alendronate treatment for fibrous dysplasia of bone. J Clin Endocrinol Metab. 2014;99(11):4133–40.
Article
CAS
Google Scholar
Chapurlat RD, Hugueny P, Delmas PD, Meunier PJ. Treatment of fibrous dysplasia of bone with intravenous pamidronate: long-term effectiveness and evaluation of predictors of response to treatment. Bone. 2004;35(1):235–42.
Article
CAS
Google Scholar
Plotkin H, Rauch F, Zeitlin L, Munns C, Travers R, Glorieux FH. Effect of pamidronate treatment in children with polyostotic fibrous dysplasia of bone. J Clin Endocrinol Metab. 2003;88(10):4569–75.
Article
CAS
Google Scholar
Majoor BCJ, Peeters-Boef MJ, van de Sande MAJ, Appelman-Dijkstra NM, Hamdy NAT, Dijkstra PDS. What Is the role of allogeneic cortical strut grafts in the treatment of fibrous dysplasia of the proximal femur? Clin Orthop Relat Res. 2017;475(3):786–95.
Article
Google Scholar
Majoor BCJ, Leithner A, van de Sande MAJ, Appelman-Dijkstra NM, Hamdy NAT, Dijkstra PDS. Individualized approach to the surgical management of fibrous dysplasia of the proximal femur. Orphanet J Rare Dis. 2018;13(1):72.
Article
Google Scholar
Zhang X, Chen C, Duan H, Tu C. Radiographic classification and treatment of fibrous dysplasia of the proximal femur: 227 femurs with a mean follow-up of 6 years. J Orthop Surg Res. 2015;10:171.
Article
Google Scholar
Majoor BCJ, Andela CD, Bruggemann J, van de Sande MAJ, Kaptein AA, Hamdy NAT, et al. Determinants of impaired quality of life in patients with fibrous dysplasia. Orphanet J Rare Dis. 2017;12(1):80.
Article
Google Scholar
Majoor BCJ, Andela CD, Quispel CR, Rotman M, Dijkstra PDS, Hamdy NAT, et al. Illness perceptions are associated with quality of life in patients with fibrous dysplasia. Calcif Tissue Int. 2018;102(1):23–31.
Article
CAS
Google Scholar
Rotman M, Andela CD, Majoor BCJ, Dijkstra PDS, Hamdy NAT, Kaptein AA, et al. Passive coping strategies are associated with more impairment in quality of life in patients with fibrous dysplasia. Calcif Tissue Int. 2018;103(5):469–75.
Article
CAS
Google Scholar
Letton C, Cheung C, Nordin A. Does an enhanced recovery integrated care pathway (ICP) encourage adherence to prescribing guidelines, accelerate postoperative recovery and reduce the length of stay for gynaecological oncology patients? J Obstet Gynaecol. 2013;33(3):296–7.
Article
CAS
Google Scholar
Aziz EF, Javed F, Pulimi S, Pratap B, De Benedetti Zunino ME, Tormey D, et al. Implementing a pathway for the management of acute coronary syndrome leads to improved compliance with guidelines and a decrease in angina symptoms. J Healthc Qual. 2012;34(4):5–14.
Article
Google Scholar
van Hoeve J, de Munck L, Otter R, de Vries J, Siesling S. Quality improvement by implementing an integrated oncological care pathway for breast cancer patients. Breast. 2014;23(4):364–70.
Article
Google Scholar
Tremblay St-Germain A, Devitt KS, Kagedan DJ, Barretto B, Tung S, Gallinger S, et al. The impact of a clinical pathway on patient postoperative recovery following pancreaticoduodenectomy. HPB (Oxford). 2017;19(9):799–807.
Article
Google Scholar
Panella M, Marchisio S, Di Stanislao F. Reducing clinical variations with clinical pathways: do pathways work? Int J Qual Health Care. 2003;15(6):509–21.
Article
CAS
Google Scholar
Rutman L, Klein EJ, Brown JC. Clinical pathway produces sustained improvement in acute gastroenteritis care. Pediatrics. 2017. https://doi.org/10.1542/peds.2016-4310.
Article
Google Scholar
Pound CM, Gelt V, Akiki S, Eady K, Moreau K, Momoli F, et al. Nurse-driven clinical pathway for inpatient asthma: a randomized controlled trial. Hosp Pediatr. 2017;7(4):204–13.
Article
Google Scholar
Deneckere S, Euwema M, Lodewijckx C, Panella M, Mutsvari T, Sermeus W. Better interprofessional teamwork, higher level of organized care, and lower risk of burnout in acute health care teams using care pathways: a cluster randomized controlled trial. Med Care. 2013;51(1):99–107.
Article
Google Scholar
Majoor BCJ, Traunmueller E, Maurer-Ertl W, Appelman-Dijkstra NM, Fink A, Liegl B, et al. Pain in fibrous dysplasia: relationship with anatomical and clinical features. Acta Orthop. 2019;90(4):401–5.
Article
Google Scholar
Hagelstein-Rotman M, Genders SW, Andela CD, Dijkstra PDS, Majoor BCJ, Notting IC, et al. Patients with isolated craniofacial dysplasia report better quality of life compared with those with craniofacial dysplasia and extracranial involvement. Ophthalmic Plast Reconstr Surg. 2020;36(3):292–7.
Article
Google Scholar
Ware JEJ, Sherbourne CD. The MOS 36-ltem short-form health survey (SF-36): I. Conceptual framework and item selection. Med Care. 1992;30(6):473–83.
Article
Google Scholar
Rabin R, de Charro F. EQ-5D: a measure of health status from the EuroQol group. Ann Med. 2001;33(5):337–43.
Article
CAS
Google Scholar
Cleeland CS, Ryan KM. Pain assessment: global use of the Brief Pain Inventory. Ann Acad Med Singap. 1994;23(2):129–38.
CAS
Google Scholar
Moss-Morris R, Weinman J, Petrie K, Horne R, Cameron L, Buick D. The revised illness perception questionnaire (IPQ-R). Psychol Health. 2002;17(1):1–16.
Article
Google Scholar
Collins MT, Kushner H, Reynolds JC, Chebli C, Kelly MH, Gupta A, et al. An instrument to measure skeletal burden and predict functional outcome in fibrous dysplasia of bone. J Bone Miner Res. 2005;20(2):219–26.
Article
Google Scholar
Samsa G, Edelman D, Rothman ML, Williams GR, Lipscomb J, Matchar D. Determining clinically important differences in health status measures: a general approach with illustration to the Health utilities index mark II. Pharmacoeconomics. 1999;15(2):141–55.
Article
CAS
Google Scholar
Salaffi F, Stancati A, Silvestri CA, Ciapetti A, Grassi W. Minimal clinically important changes in chronic musculoskeletal pain intensity measured on a numerical rating scale. Eur J Pain. 2004;8(4):283–91.
Article
Google Scholar
van der Bruggen W, Hagelstein-Rotman M, de Geus-Oei LF, Smit F, Dijkstra PDS, Appelman-Dijkstra NM, et al. Quantifying skeletal burden in fibrous dysplasia using sodium fluoride PET/CT. Eur J Nucl Med Mol Imaging. 2020;47(6):1527–37.
Article
Google Scholar
Groenwold RHH, Goeman JJ, Cessie SL, Dekkers OM. Multiple testing: when is many too much? Eur J Endocrinol. 2021;184(3):E11–4.
Article
CAS
Google Scholar
Dekkers OM. Why not to (over)emphasize statistical significance. Eur J Endocrinol. 2019;181(3):E1–2.
Article
CAS
Google Scholar
Aaronson NK, Muller M, Cohen PD, Essink-Bot ML, Fekkes M, Sanderman R, et al. Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations. J Clin Epidemiol. 1998;51(11):1055–68.
Article
CAS
Google Scholar
Kelly MH, Brillante B, Collins MT. Pain in fibrous dysplasia of bone: age-related changes and the anatomical distribution of skeletal lesions. Osteoporos Int. 2008;19(1):57–63.
Article
CAS
Google Scholar
van Ballegooijen H, Goossens L, Bruin RH, Michels R, Krol M. Concerns, quality of life, access to care and productivity of the general population during the first 8 weeks of the coronavirus lockdown in Belgium and the Netherlands. BMC Health Serv Res. 2021;21(1):227.
Article
Google Scholar
Puccinelli PJ, da Costa TS, Seffrin A, de Lira CAB, Vancini RL, Nikolaidis PT, et al. Reduced level of physical activity during COVID-19 pandemic is associated with depression and anxiety levels: an internet-based survey. BMC Public Health. 2021;21(1):425.
Article
CAS
Google Scholar
Project LCR. Corona Barometer UMC Groningen 2021. https://coronabarometer.nl/.