{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,13]],"date-time":"2026-10-13T13:38:57Z","timestamp":1791898737961,"version":"4.3.4"},"reference-count":122,"publisher":"SAGE Publications","issue":"8","license":[{"start":{"date-parts":[[2007,8,1]],"date-time":"2007-08-01T00:00:00Z","timestamp":1185926400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["J Child Neurol"],"published-print":{"date-parts":[[2007,8]]},"abstract":"<jats:p>Spinal muscular atrophy is a neurodegenerative disease that requires multidisciplinary medical care. Recent progress in the understanding of molecular pathogenesis of spinal muscular atrophy and advances in medical technology have not been matched by similar developments in the care for spinal muscular atrophy patients. Variations in medical practice coupled with differences in family resources and values have resulted in variable clinical outcomes that are likely to compromise valid measure of treatment effects during clinical trials. The International Standard of Care Committee for Spinal Muscular Atrophy was formed in 2005, with a goal of establishing practice guidelines for clinical care of these patients. The 12 core committee members worked with more than 60 spinal muscular atrophy experts in the field through conference calls, e-mail communications, a Delphi survey, and 2 in-person meetings to achieve consensus on 5 care areas: diagnostic\/new interventions, pulmonary, gastrointestinal\/nutrition, orthopedics\/rehabilitation, and palliative care. Consensus was achieved on several topics related to common medical problems in spinal muscular atrophy, diagnostic strategies, recommendations for assessment and monitoring, and therapeutic interventions in each care area. A consensus statement was drafted to address the 5 care areas according to 3 functional levels of the patients: nonsitter, sitter, and walker. The committee also identified several medical practices lacking consensus and warranting further investigation. It is the authors' intention that this document be used as a guideline, not as a practice standard for their care. A practice standard for spinal muscular atrophy is urgently needed to help with the multidisciplinary care of these patients.<\/jats:p>","DOI":"10.1177\/0883073807305788","type":"journal-article","created":{"date-parts":[[2007,8,29]],"date-time":"2007-08-29T20:32:29Z","timestamp":1188419549000},"page":"1027-1049","source":"Crossref","is-referenced-by-count":816,"title":["Consensus Statement for Standard of Care in Spinal Muscular Atrophy"],"prefix":"10.1177","volume":"22","author":[{"given":"Ching H.","family":"Wang","sequence":"first","affiliation":[{"name":"Stanford University Medical Center, Stanford, California,"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Richard S.","family":"Finkel","sequence":"additional","affiliation":[{"name":"The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Enrico S.","family":"Bertini","sequence":"additional","affiliation":[{"name":"Bambino Gesu' Children's Research Hospital, Rome, Italy"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mary","family":"Schroth","sequence":"additional","affiliation":[{"name":"University of Wisconsin Children's Hospital, Madison"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anita","family":"Simonds","sequence":"additional","affiliation":[{"name":"Sleep & Ventilation Unit, Royal Brompton & Harefield NHS Trust, London, England"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Brenda","family":"Wong","sequence":"additional","affiliation":[{"name":"Cincinnati Children's Hospital Medical Center, Cincinnati, Ohio"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Annie","family":"Aloysius","sequence":"additional","affiliation":[{"name":"Hammersmith Hospital, London, England"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leslie","family":"Morrison","sequence":"additional","affiliation":[{"name":"University of New Mexico Health Sciences Center, Albuquerque"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marion","family":"Main","sequence":"additional","affiliation":[{"name":"Hammersmith Hospital, London, England"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Thomas O.","family":"Crawford","sequence":"additional","affiliation":[{"name":"The Johns Hopkins Hospital, Baltimore, Maryland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anthony","family":"Trela","sequence":"additional","affiliation":[{"name":"Stanford University Medical Center, Stanford, California"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"Participants of the International Conference on SMA Standard of Care","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2007,8,1]]},"reference":[{"key":"atypb1","doi-asserted-by":"publisher","DOI":"10.1212\/01.wnl.0000183282.10946.c7"},{"key":"atypb2","unstructured":"Delbecq A., Van de Ven A., Gustafson D. The Delphi technique. In: Delbecq A, Van de Ven A, Gustafson D , et al, eds. Group Techniques for Program Planning: A Guide to Nominal Group and Delphi Processes. Madison, Wis: Scott Foresman; 1975:83-107."},{"key":"atypb3","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/keg403"},{"key":"atypb4","first-page":"2290","volume":"31","author":"Wallace CA","year":"2004","journal-title":"J Rheumatol."},{"key":"atypb5","doi-asserted-by":"publisher","DOI":"10.1111\/j.0013-9580.2004.02404.x"},{"key":"atypb6","unstructured":"Munsat TL The spinal muscular atrophies. Current Neurology. St Louis, Mo: Mosby; 1994:55-71."},{"key":"atypb7","doi-asserted-by":"publisher","DOI":"10.1016\/S0960-8966(06)80015-5"},{"key":"atypb8","unstructured":"Dubowitz V. Disorders of the lower motor neurone: the spinal muscular atrophies . In: Dubowitz V, ed. Muscle Disorders in Childhood. London: W B Saunders ; 1995:325-367."},{"key":"atypb9","doi-asserted-by":"publisher","DOI":"10.1016\/S0022-510X(96)00284-5"},{"key":"atypb10","doi-asserted-by":"publisher","DOI":"10.1016\/S1090-3798(99)80012-9"},{"key":"atypb11","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2005.07.005"},{"key":"atypb12","doi-asserted-by":"publisher","DOI":"10.1016\/S0960-8966(02)00211-0"},{"key":"atypb13","doi-asserted-by":"publisher","DOI":"10.1093\/hmg\/5.9.1377"},{"key":"atypb14","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.1992.00530330027010"},{"key":"atypb15","doi-asserted-by":"crossref","first-page":"411","DOI":"10.1016\/0387-7604(93)90080-R","volume":"15","author":"Barth PG","year":"1993","journal-title":"Brain Dev."},{"key":"atypb16","doi-asserted-by":"publisher","DOI":"10.1097\/00019052-199312000-00006"},{"key":"atypb17","first-page":"21","volume":"9","author":"Chou SM","year":"1990","journal-title":"Clin Neuropathol"},{"key":"atypb18","doi-asserted-by":"publisher","DOI":"10.1053\/ejpn.1999.0177"},{"key":"atypb19","doi-asserted-by":"publisher","DOI":"10.1016\/S0887-8994(00)00166-1"},{"key":"atypb20","first-page":"217","volume":"142","author":"Greenberg F.","year":"1988","journal-title":"Am J Dis Child."},{"key":"atypb21","doi-asserted-by":"publisher","DOI":"10.1093\/hmg\/4.7.1213"},{"key":"atypb22","doi-asserted-by":"publisher","DOI":"10.1002\/ana.10755"},{"key":"atypb23","doi-asserted-by":"publisher","DOI":"10.1038\/ng703"},{"key":"atypb24","doi-asserted-by":"publisher","DOI":"10.1093\/hmg\/4.4.631"},{"key":"atypb25","doi-asserted-by":"publisher","DOI":"10.1093\/hmg\/7.10.1531"},{"key":"atypb26","doi-asserted-by":"publisher","DOI":"10.1002\/ana.20473"},{"key":"atypb27","doi-asserted-by":"publisher","DOI":"10.1016\/S0960-8966(97)00459-8"},{"key":"atypb28","first-page":"1233","volume":"57","author":"American Society of Human Genetics Board of Directors","year":"1995","journal-title":"Am J Hum Genet."},{"key":"atypb29","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2004.09.004"},{"key":"atypb30","doi-asserted-by":"publisher","DOI":"10.1183\/09031936.03.00044303a"},{"key":"atypb31","doi-asserted-by":"publisher","DOI":"10.1136\/thorax.57.8.724"},{"key":"atypb32","doi-asserted-by":"publisher","DOI":"10.1378\/chest.108.3.779"},{"key":"atypb33","doi-asserted-by":"publisher","DOI":"10.1378\/chest.126.3.831"},{"key":"atypb34","first-page":"319","volume":"10","author":"Barois A.","year":"1992","journal-title":"Eur Respir Rev"},{"key":"atypb35","first-page":"275","volume":"3","author":"Barois A.","year":"1993","journal-title":"Eur Respir Rev"},{"key":"atypb36","doi-asserted-by":"publisher","DOI":"10.1034\/j.1399-3003.2000.016003476.x"},{"key":"atypb37","doi-asserted-by":"crossref","first-page":"33","DOI":"10.1542\/peds.53.1.33","volume":"53","author":"Mellins RB","year":"1974","journal-title":"Pediatrics"},{"key":"atypb38","doi-asserted-by":"publisher","DOI":"10.1016\/S0960-8966(02)00212-2"},{"key":"atypb39","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2003.09.003"},{"key":"atypb40","doi-asserted-by":"publisher","DOI":"10.1164\/ajrccm.153.2.8564147"},{"key":"atypb41","doi-asserted-by":"publisher","DOI":"10.1164\/ajrccm.164.1.2008171"},{"key":"atypb42","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2004.065961"},{"key":"atypb43","doi-asserted-by":"crossref","first-page":"1553","DOI":"10.1378\/chest.104.5.1553","volume":"104","author":"Bach JR","year":"1993","journal-title":"Chest"},{"key":"atypb44","doi-asserted-by":"publisher","DOI":"10.1378\/chest.117.4.1100"},{"key":"atypb45","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.10110"},{"key":"atypb46","doi-asserted-by":"publisher","DOI":"10.1183\/09031936.03.00048102"},{"key":"atypb47","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.200307-885ST"},{"key":"atypb48","doi-asserted-by":"publisher","DOI":"10.1136\/thx.2004.037424"},{"key":"atypb49","doi-asserted-by":"publisher","DOI":"10.1097\/01.PHM.0000083669.22483.04"},{"key":"atypb50","doi-asserted-by":"publisher","DOI":"10.1016\/j.prrv.2005.06.003"},{"key":"atypb51","doi-asserted-by":"publisher","DOI":"10.1016\/0003-9993(94)90001-9"},{"key":"atypb52","first-page":"301","volume":"101","author":"Nutman J.","year":"1981","journal-title":"Harefuah."},{"key":"atypb53","doi-asserted-by":"publisher","DOI":"10.1016\/S1071-9091(98)80026-0"},{"key":"atypb54","doi-asserted-by":"publisher","DOI":"10.1016\/S0889-5406(99)70296-9"},{"key":"atypb55","doi-asserted-by":"publisher","DOI":"10.1203\/00006450-199408000-00020"},{"key":"atypb56","doi-asserted-by":"publisher","DOI":"10.1007\/BF00971781"},{"key":"atypb57","doi-asserted-by":"publisher","DOI":"10.1136\/adc.67.3.352-b"},{"key":"atypb58","doi-asserted-by":"publisher","DOI":"10.1177\/000348940111001011"},{"key":"atypb59","first-page":"CD004303","volume":"2","author":"Hill M.","year":"2004","journal-title":"Cochrane Database Syst Rev."},{"key":"atypb60","doi-asserted-by":"publisher","DOI":"10.1016\/S0887-8994(97)00227-0"},{"key":"atypb61","doi-asserted-by":"publisher","DOI":"10.1111\/j.1572-0241.2005.41763.x"},{"key":"atypb62","author":"Yuan N.","journal-title":"J Child Neurol"},{"key":"atypb63","doi-asserted-by":"crossref","first-page":"e817","DOI":"10.1542\/peds.2005-1655","volume":"117","author":"Canani RB","year":"2006","journal-title":"Pediatrics"},{"key":"atypb64","doi-asserted-by":"publisher","DOI":"10.1001\/jama.292.16.1955"},{"key":"atypb65","doi-asserted-by":"publisher","DOI":"10.1086\/375425"},{"key":"atypb66","doi-asserted-by":"publisher","DOI":"10.1080\/10790268.2004.11753781"},{"key":"atypb67","unstructured":"Lee RD, Nieman DC Nutritional assessment. Madison, Wis: Brown & Benchmark; 1993:172-173, Appendix O."},{"key":"atypb68","doi-asserted-by":"publisher","DOI":"10.1097\/00005176-200111000-00016"},{"key":"atypb69","doi-asserted-by":"publisher","DOI":"10.1055\/s-2004-830366"},{"key":"atypb70","doi-asserted-by":"publisher","DOI":"10.1002\/jbmr.5650070403"},{"key":"atypb71","doi-asserted-by":"publisher","DOI":"10.1016\/j.bone.2004.06.009"},{"key":"atypb72","doi-asserted-by":"publisher","DOI":"10.1385\/JCD:8:3:298"},{"key":"atypb73","volume-title":"Total body lean mass and bone mineral content in spinal muscular atrophy [abstract]. Presented at: the American","author":"Swoboda KJ","year":"2005"},{"key":"atypb74","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(95)91439-0"},{"key":"atypb75","doi-asserted-by":"publisher","DOI":"10.1212\/01.WNL.0000086813.59722.72"},{"key":"atypb76","doi-asserted-by":"publisher","DOI":"10.1007\/s00401-002-0638-1"},{"key":"atypb77","doi-asserted-by":"publisher","DOI":"10.1007\/BF00313933"},{"key":"atypb78","doi-asserted-by":"publisher","DOI":"10.1002\/1531-8249(199903)45:3<337::AID-ANA9>3.0.CO;2-U"},{"key":"atypb79","doi-asserted-by":"publisher","DOI":"10.1136\/jnnp.43.6.546"},{"key":"atypb80","doi-asserted-by":"publisher","DOI":"10.1016\/S0387-7604(12)80315-9"},{"key":"atypb81","doi-asserted-by":"publisher","DOI":"10.1023\/A:1006880529195"},{"key":"atypb82","doi-asserted-by":"publisher","DOI":"10.1016\/0887-8994(94)00100-G"},{"key":"atypb83","doi-asserted-by":"publisher","DOI":"10.1016\/0960-8966(96)00018-1"},{"key":"atypb84","doi-asserted-by":"publisher","DOI":"10.1212\/WNL.47.4.973"},{"key":"atypb85","first-page":"549","volume":"65","author":"Eng GD","year":"1984","journal-title":"Arch Phys Med Rehabil."},{"key":"atypb86","first-page":"1181","volume":"189","author":"Barois A.","year":"2005","journal-title":"Bull Acad Natl Med."},{"key":"atypb87","doi-asserted-by":"publisher","DOI":"10.1097\/01241398-200301000-00002"},{"key":"atypb88","first-page":"177","volume":"75","author":"Granata C.","year":"1990","journal-title":"Chir Organi Mov"},{"key":"atypb89","doi-asserted-by":"publisher","DOI":"10.1080\/16501970510030156"},{"key":"atypb90","doi-asserted-by":"publisher","DOI":"10.1177\/088307388900400208"},{"key":"atypb91","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2006.05.088"},{"key":"atypb92","doi-asserted-by":"publisher","DOI":"10.1016\/S1090-3798(03)00060-6"},{"key":"atypb93","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2005.11.010"},{"key":"atypb94","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2006.03.015"},{"key":"atypb95","doi-asserted-by":"publisher","DOI":"10.1016\/j.nmd.2006.03.005"},{"key":"atypb96","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2004-0668"},{"key":"atypb97","doi-asserted-by":"publisher","DOI":"10.1007\/BF02282993"},{"key":"atypb98","doi-asserted-by":"publisher","DOI":"10.1053\/ejpn.2001.0510"},{"key":"atypb99","doi-asserted-by":"publisher","DOI":"10.1002\/mus.10166"},{"key":"atypb100","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.59.9.1445"},{"key":"atypb101","doi-asserted-by":"publisher","DOI":"10.1001\/archneur.60.8.1130"},{"key":"atypb102","doi-asserted-by":"publisher","DOI":"10.1007\/s11910-004-0016-6"},{"key":"atypb103","doi-asserted-by":"publisher","DOI":"10.1177\/104990910201900109"},{"key":"atypb104","doi-asserted-by":"publisher","DOI":"10.1097\/01.brs.0000208131.42824.c3"},{"key":"atypb105","doi-asserted-by":"publisher","DOI":"10.1302\/0301-620X.63B4.7298675"},{"key":"atypb106","doi-asserted-by":"publisher","DOI":"10.1136\/adc.84.6.521"},{"key":"atypb107","doi-asserted-by":"publisher","DOI":"10.1097\/00007632-199009000-00019"},{"key":"atypb108","doi-asserted-by":"publisher","DOI":"10.1302\/0301-620X.83B1.10029"},{"key":"atypb109","doi-asserted-by":"publisher","DOI":"10.1016\/0960-8966(93)90061-N"},{"key":"atypb110","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.1989.tb04029.x"},{"key":"atypb111","doi-asserted-by":"publisher","DOI":"10.1177\/230949900201000207"},{"key":"atypb112","doi-asserted-by":"publisher","DOI":"10.1046\/j.1440-1754.2003.00266.x"},{"key":"atypb113","doi-asserted-by":"publisher","DOI":"10.1097\/00007632-199708010-00007"},{"key":"atypb114","doi-asserted-by":"publisher","DOI":"10.1302\/0301-620X.79B1.6699"},{"key":"atypb115","doi-asserted-by":"publisher","DOI":"10.1097\/00007632-199907010-00006"},{"key":"atypb116","doi-asserted-by":"publisher","DOI":"10.1097\/01241398-199009000-00013"},{"key":"atypb117","doi-asserted-by":"publisher","DOI":"10.1302\/0301-620X.87B11.16216"},{"key":"atypb118","doi-asserted-by":"publisher","DOI":"10.1097\/01.bsd.0000154457.62714.4b"},{"key":"atypb119","doi-asserted-by":"crossref","first-page":"443","DOI":"10.1016\/S0873-2159(15)30520-1","volume":"11","author":"Vasconcelos M.","year":"2005","journal-title":"Rev Port Pneumol."},{"key":"atypb120","doi-asserted-by":"publisher","DOI":"10.1053\/apmr.2003.50243"},{"key":"atypb121","doi-asserted-by":"publisher","DOI":"10.1542\/peds.110.2.e24"},{"key":"atypb122","doi-asserted-by":"publisher","DOI":"10.1016\/S0387-7604(99)00127-8"}],"container-title":["Journal of Child Neurology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/0883073807305788","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/0883073807305788","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,29]],"date-time":"2026-04-29T20:34:22Z","timestamp":1777494862000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/0883073807305788"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2007,8]]},"references-count":122,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2007,8]]}},"alternative-id":["10.1177\/0883073807305788"],"URL":"https:\/\/doi.org\/10.1177\/0883073807305788","relation":{},"ISSN":["0883-0738","1708-8283"],"issn-type":[{"value":"0883-0738","type":"print"},{"value":"1708-8283","type":"electronic"}],"subject":[],"published":{"date-parts":[[2007,8]]}}}