Development of a core outcome set for mucopolysaccharidoses (MPS) in children: Results from Delphi surveys and a consensus workshop

被引:0
|
作者
Howie, Alison H. [1 ]
Wyatt, Alexandra [2 ]
Inbar-Feigenberg, Michal [3 ]
Mitchell, John J. [4 ]
Smith, Maureen [5 ]
Angel, Kim [6 ]
Gentle, Jenifer
Butcher, Nancy J. [3 ]
Offringa, Martin [3 ]
Campeau, Philippe M. [7 ]
Chan, Alicia K. [8 ]
Chakraborty, Pranesh [2 ]
Chow, Andrea [9 ]
El Turk, Farah [4 ]
Greenberg, Cheryl R. [10 ]
Mamak, Eva [3 ]
Mhanni, Aziz [10 ]
Rupar, Tony [11 ]
Sparkes, Rebecca [12 ]
Thavorn, Kednapa [13 ]
Tingley, Kylie [9 ]
Potter, Beth K. [9 ]
机构
[1] Univ Ottawa, Sch Epidemiol & Publ Hlth, Ottawa, ON, Canada
[2] Childrens Hosp Eastern Ontario, Ottawa, ON, Canada
[3] Hosp Sick Children, Toronto, ON, Canada
[4] McGIll Univ, Hlth Ctr, Montreal, PQ, Canada
[5] Canadian Org Rare Disorders, Ottawa, ON, Canada
[6] Canadian MPS Soc, Vancouver, BC, Canada
[7] Univ Montreal, Montreal, PQ, Canada
[8] Univ Alberta, Edmonton, AB, Canada
[9] Univ Ottawa, Ottawa, ON, Canada
[10] Max Rady Coll Med, Winnipeg, MB, Canada
[11] London Hlth Sci Ctr, London, ON, Canada
[12] Univ Calgary, Calgary, AB, Canada
[13] Ottawa Hosp Res Inst, Ottawa, ON, Canada
关键词
D O I
10.1016/j.ymgme.2022.107154
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
171
引用
收藏
页码:62 / 62
页数:1
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