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
来源：
MOLECULAR GENETICS AND METABOLISM | 2023年 / 138卷 / 02期
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
相关论文
共 50 条
  • [21] World Workshop on Oral Medicine VIII: Development of a core outcome set for oral lichen planus: a consensus study
    Lopez-Pintor, Rosa Maria
    Diniz-Freitas, Marcio
    Ramesh, Shilpa Shree Kuduva
    Valdez, J. Amadeo
    Bissonnette, Caroline
    Dan, Hongxia
    Brennan, Michael T.
    Burkhart, Nancy W.
    Greenberg, Martin S.
    Farag, Arwa
    Hong, Catherine
    Sollecito, Thomas P.
    Setterfield, Jane F.
    Woo, Sook-Bin
    Riordain, Richeal Ni
    Robledo-Sierra, Jairo
    Taylor, Jennifer
    ORAL SURGERY ORAL MEDICINE ORAL PATHOLOGY ORAL RADIOLOGY, 2023, 135 (06): : 792 - 803
  • [22] Core Health Outcomes in Childhood Epilepsy (CHOICE): Development of a core outcome set using systematic review methods and a Delphi survey consensus
    Crudgington, Holly
    Rogers, Morwenna
    Bray, Lucy
    Carter, Bernie
    Currier, Janet
    Dunkley, Colin
    Gibbon, Frances M.
    Hughes, Dyfrig
    Lyle, Samantha
    Roberts, Deborah
    Smith, Catrin Tudur
    Gringras, Paul
    Pal, Deb K.
    Morris, Christopher
    EPILEPSIA, 2019, 60 (05) : 857 - 871
  • [23] Development of a core outcome set for epilepsy in pregnancy (E-CORE): a national multi-stakeholder modified Delphi consensus study
    Al Wattar, B. H.
    Tamilselvan, K.
    Khan, R.
    Kelso, A.
    Sinha, A.
    Pirie, A. M.
    McCorry, D.
    Khan, K. S.
    Thangaratinam, S.
    BJOG-AN INTERNATIONAL JOURNAL OF OBSTETRICS AND GYNAECOLOGY, 2017, 124 (04) : 661 - 667
  • [24] Development of a core outcome set for quality of life for adults with drug-resistant epilepsy: A multistakeholder Delphi consensus study
    Chiang, Sharon
    Moss, Robert
    Stern, John M.
    Hughes, Inna
    Josephson, S. Andrew
    Pearce, Jennifer R.
    Kopald, Brandon E.
    Patel, Anup D.
    Rao, Vikram R. R.
    EPILEPSIA, 2023, 64 (01) : 170 - 183
  • [25] Development of a core outcome set for myelodysplastic syndromes - a Delphi study from the EUMDS Registry Group
    Rochau, Ursula
    Stojkov, Igor
    Conrads-Frank, Annette
    Borba, Helena H.
    Koinig, Karin A.
    Arvandi, Marjan
    van Marrewijk, Corine
    Garelius, Hege
    Germing, Ulrich
    Symeonidis, Argiris
    Sanz, Guillermo F.
    Fenaux, Pierre
    de Witte, Theo
    Efficace, Fabio
    Siebert, Uwe
    Stauder, Reinhard
    BRITISH JOURNAL OF HAEMATOLOGY, 2020, 191 (03) : 405 - 417
  • [26] Physical Rehabilitation Core Outcomes in Critical Illness: A Modified Delphi Consensus Study to Establish a Core Outcome Set
    Connolly, B.
    Barclay, M.
    Corner, E.
    Davies, C.
    Hart, N.
    Pattison, N.
    Sturmey, G.
    Denehy, L.
    Needham, D. M.
    Williamson, P.
    Blackwood, B.
    AMERICAN JOURNAL OF RESPIRATORY AND CRITICAL CARE MEDICINE, 2019, 199
  • [27] Three nested RCTs of dual or single stakeholder feedback within Delphi surveys during core outcome and information set development
    Brookes, Sara
    Macefield, Rhiannon
    Williamson, Paula
    McNair, Angus
    Potter, Shelley
    Blencowe, Natalie
    Strong, Sean
    Blazeby, Jane
    TRIALS, 2015, 16
  • [28] Three nested RCTs of dual or single stakeholder feedback within Delphi surveys during core outcome and information set development
    Sara Brookes
    Rhiannon Macefield
    Paula Williamson
    Angus McNair
    Shelley Potter
    Natalie Blencowe
    Sean Strong
    Jane Blazeby
    Trials, 16
  • [29] Developing core outcome set for vitiligo clinical trials: international e-Delphi consensus
    Eleftheriadou, Viktoria
    Thomas, Kim
    van Geel, Nanja
    Hamzavi, Iltefat
    Lim, Henry
    Suzuki, Tamio
    Katayama, Ichiro
    Anbar, Tag
    Abdallah, Marwa
    Benzekri, Laila
    Gauthier, Yvon
    Harris, John
    Silva de Castro, Caio Cesar
    Pandya, Amit
    Goh, Boon Kee
    Lan, Cheng-Che E.
    Oiso, Naoki
    Al Issa, Ahmed
    Esmat, Samia
    Le Poole, Caroline
    Lee, Ai-Young
    Parsad, Davinder
    Taieb, Alain
    Picardo, Mauro
    Ezzedine, Khaled
    PIGMENT CELL & MELANOMA RESEARCH, 2015, 28 (03) : 363 - 369
  • [30] Correction to: Survey indicated that core outcome set development is increasingly including patients, being conducted internationally and using Delphi surveys
    Alice M. Biggane
    Lucy Brading
    Philippe Ravaud
    Bridget Young
    Paula R. Williamson
    Trials, 19
12345