Development of consensus guidelines for the clinical care of individuals with Sanfilippo syndrome

被引:0
|
作者
O'Neill, Cara [1 ]
Giugliani, Roberto [2 ]
Jones, Simon [3 ]
Muenzer, Joseph [4 ]
Smith, Nicholas [5 ]
Whitley, Chester B. [6 ]
Donnell, Megan [7 ]
Drake-Esposito, Elise [8 ]
Elvidge, Kristina [9 ]
Melton, Lisa [7 ]
Muschol, Nicole M. [10 ]
机构
[1] Cure Sanfilippo Fdn, Columbia, SC USA
[2] Federal Univ Rio Grande Sul, Porto Alegre, RS, Brazil
[3] St Marys Hosp, Manchester, England
[4] Univ North Carolina Chapel Hill, Chapel Hill, NC USA
[5] Univ Adelaide, Adelaide, SA, Australia
[6] Univ Minnesota, Minneapolis, MN USA
[7] Sanfilippo Childrens Fdn, Freshwater, Australia
[8] Cure Sanfilippo Fdn, Columbia, SC USA
[9] Childhood Dementia Initiat, Brookvale, NSW, Australia
[10] Hamburg Univ, Hamburg, Germany
关键词
D O I
10.1016/j.ymgme.2022.107251
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
268
引用
收藏
页码:97 / 98
页数:2
相关论文
共 50 条
  • [1] Sanfilippo syndrome: consensus guidelines for clinical care
    Nicole Muschol
    Roberto Giugliani
    Simon A. Jones
    Joseph Muenzer
    Nicholas J. C. Smith
    Chester B. Whitley
    Megan Donnell
    Elise Drake
    Kristina Elvidge
    Lisa Melton
    Cara O’Neill
    Orphanet Journal of Rare Diseases, 17
  • [2] Sanfilippo syndrome: consensus guidelines for clinical care
    Muschol, Nicole
    Giugliani, Roberto
    Jones, Simon A.
    Muenzer, Joseph
    Smith, Nicholas J. C.
    Whitley, Chester B.
    Donnell, Megan
    Drake, Elise
    Elvidge, Kristina
    Melton, Lisa
    O'Neill, Cara
    ORPHANET JOURNAL OF RARE DISEASES, 2022, 17 (01)
  • [3] Development of consensus-based guidelines for managing communication of individuals with Rett syndrome
    Townend, Gillian S.
    Bartolotta, Theresa E.
    Urbanowicz, Anna
    Wandin, Helena
    Curfs, Leopold M. G.
    AUGMENTATIVE AND ALTERNATIVE COMMUNICATION, 2020, 36 (02) : 71 - 81
  • [4] Consensus clinical management guidelines for Alstrom syndrome
    Tahani, Natascia
    Maffei, Pietro
    Dollfus, Helene
    Paisey, Richard
    Valverde, Diana
    Milan, Gabriella
    Han, Joan C.
    Favaretto, Francesca
    Madathil, Shyam C.
    Dawson, Charlotte
    Armstrong, Matthew J.
    Warfield, Adrian T.
    Duzenli, Selma
    Francomano, Clair A.
    Gunay-Aygun, Meral
    Dassie, Francesca
    Marion, Vincent
    Valenti, Marina
    Leeson-Beevers, Kerry
    Chivers, Ann
    Steeds, Richard
    Barrett, Timothy
    Geberhiwot, Tarekegn
    ORPHANET JOURNAL OF RARE DISEASES, 2020, 15 (01)
  • [5] The CARE Guidelines: Consensus-Based Clinical Case Reporting Guideline Development
    Gagnier, Joel J.
    Kienle, Gunver
    Altman, Douglas G.
    Moher, David
    Sox, Harold
    Riley, David
    HEADACHE, 2013, 53 (10): : 1541 - 1547
  • [6] The CARE Guidelines Consensus-Based Clinical Case Reporting Guideline Development
    Gagnier, Joel J.
    Riley, David
    Altman, Douglas G.
    Moher, David
    Sox, Harold
    Kienle, Gunver
    DEUTSCHES ARZTEBLATT INTERNATIONAL, 2013, 110 (37): : 603 - 608
  • [7] The CARE guidelines: consensus-based clinical case report guideline development
    Gagnier, Joel J.
    Kienle, Gunver
    Altman, Douglas G.
    Moher, David
    Sox, Harold
    Riley, David
    JOURNAL OF CLINICAL EPIDEMIOLOGY, 2014, 67 (01) : 46 - 51
  • [8] The CARE guidelines: Consensus-based clinical case reporting guideline development
    Gagnier J.J.
    Kienle G.
    Altman D.G.
    Moher D.
    Sox H.
    Riley D.
    the CARE Group
    Allaire A.
    Aronson J.
    Carpenter J.
    Gagnier J.
    Hanaway P.
    Hayes C.
    Jones D.
    Kaszkin-Bettag M.
    Kidd M.
    Kiene H.
    Kienle G.
    Kligler B.
    Knutson L.
    Koch C.
    Milgate K.
    Mittelman M.
    Oltean H.
    Plotnikoff G.
    Rison R.A.
    Sethi A.
    Shamseer L.
    Smith R.
    Tugwell P.
    Journal of Medical Case Reports, 7 (1)
  • [9] Clinical practice guidelines for nephrotic syndrome: consensus is emerging
    Sinha, Aditi
    Bagga, Arvind
    PEDIATRIC NEPHROLOGY, 2022, 37 (12) : 2975 - 2984
  • [10] Consensus clinical management guidelines for Alström syndrome
    Natascia Tahani
    Pietro Maffei
    Hélène Dollfus
    Richard Paisey
    Diana Valverde
    Gabriella Milan
    Joan C. Han
    Francesca Favaretto
    Shyam C. Madathil
    Charlotte Dawson
    Matthew J. Armstrong
    Adrian T. Warfield
    Selma Düzenli
    Clair A. Francomano
    Meral Gunay-Aygun
    Francesca Dassie
    Vincent Marion
    Marina Valenti
    Kerry Leeson-Beevers
    Ann Chivers
    Richard Steeds
    Timothy Barrett
    Tarekegn Geberhiwot
    Orphanet Journal of Rare Diseases, 15