{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,23]],"date-time":"2025-10-23T05:26:27Z","timestamp":1761197187600},"reference-count":11,"publisher":"FapUNIFESP (SciELO)","issue":"6","content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Arq. Neuro-Psiquiatr."],"published-print":{"date-parts":[[2013,6]]},"abstract":"<jats:p>Huntington's disease (HD) is a rare neurodegenerative disease with a multitude of symptoms, which requires access to specialized multidisciplinary care for adequate management. The aim of this study was to survey the characteristics of care in various HD centers in South America (SA).  Methods A questionnaire was sent to 24 centers involved in the care for HD patients in SA.   Results Of the total 24 centers, 19 (79.2%) are academic units. The majority of centers (62.5%) are general movement disorders clinics. Multidisciplinary care is available in 19 (79.2%) centers and in 20 (83.3%) care is provided free of charge. Genetic testing and counseling are available in 25 and 66.6% of centers, respectively. The majority of centers (83.3%) have no institutional support for end-stage care.   Conclusions Although HD centers in SA are committed to providing multidisciplinary care, access to genetic counseling and end-stage care are lacking in most centers.<\/jats:p>","DOI":"10.1590\/0004-282x20130040","type":"journal-article","created":{"date-parts":[[2013,8,14]],"date-time":"2013-08-14T16:27:03Z","timestamp":1376497623000},"page":"368-370","source":"Crossref","is-referenced-by-count":4,"title":["Care of patients with Huntington's disease in South America: a survey"],"prefix":"10.1590","volume":"71","author":[{"given":"Ricardo Oliveira Horta","family":"Maciel","sequence":"first","affiliation":[{"name":"UFMG,  Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Francisco Eduardo Costa","family":"Cardoso","sequence":"additional","affiliation":[{"name":"UFMG,  Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Pedro","family":"Chana-Cuevas","sequence":"additional","affiliation":[{"name":"Universidad de Santiago de Chile,  Chile"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlos","family":"Cosentino","sequence":"additional","affiliation":[{"name":"Instituto Nacional de Ciencias Neurologicas,  Peru"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"William","family":"Fernandez","sequence":"additional","affiliation":[{"name":"Universidad Nacional de Colombia,  Colombia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carlos R. M.","family":"Rieder","sequence":"additional","affiliation":[{"name":"Universidade Federal Ciencias da Saude Porto Alegre (UFCSPA),  Brazil"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Marcos","family":"Serrano-Duenas","sequence":"additional","affiliation":[{"name":"Carlos Andrade Marin Hospital and Medicine Faculty,  Ecuador"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Roberto","family":"Weiser","sequence":"additional","affiliation":[{"name":"Instituto de Clinicas,  Venezuela"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"530","reference":[{"key":"ref1","doi-asserted-by":"crossref","first-page":"218","DOI":"10.1016\/S0140-6736(07)60111-1","article-title":"Huntington's disease","volume":"369","author":"Walker FO","year":"2007","journal-title":"Lancet"},{"key":"ref2","doi-asserted-by":"crossref","first-page":"1711","DOI":"10.1002\/mds.23716","article-title":"Factors contributing to institutionalization in patients with Huntington's disease","volume":"26","author":"Rosenblatt A","year":"2011","journal-title":"Mov Disord"},{"key":"ref3","doi-asserted-by":"crossref","first-page":"125","DOI":"10.12968\/ijpn.2007.13.3.23274","article-title":"Palliative care provision in Huntington's disease","volume":"13","author":"Travers E","year":"2007","journal-title":"Int J Palliat Nurs"},{"key":"ref4","doi-asserted-by":"crossref","first-page":"1491","DOI":"10.1002\/mds.21971","article-title":"The current clinical management of Huntington's disease","volume":"23","author":"Phillips W","year":"2008","journal-title":"Mov Disord"},{"key":"ref5","doi-asserted-by":"crossref","first-page":"500","DOI":"10.1111\/j.1365-2648.2009.05217.x","article-title":"Huntington disease: families' experiences of healthcare services","volume":"66","author":"Skirton H","year":"2010","journal-title":"J Advanc Nurs"},{"key":"ref6","doi-asserted-by":"crossref","first-page":"226","DOI":"10.1111\/j.1365-2702.2007.02276.x","article-title":"Exploring supportive care for individuals affected by Huntington disease and their family caregivers in a community setting","volume":"17","author":"Soltysiak B","year":"2008","journal-title":"J Clin Nurs"},{"key":"ref7","doi-asserted-by":"crossref","first-page":"83","DOI":"10.12968\/bjon.1997.6.2.83","article-title":"Using research to develop care for patients with Huntington's disease","volume":"23","author":"Skirton H","year":"1997","journal-title":"Brit J Nurs"},{"key":"ref8","doi-asserted-by":"crossref","first-page":"225","DOI":"10.1177\/1742395311403637","article-title":"Healthcare experiences of families affected by Huntington disease: need for improved care","volume":"7","author":"Etchegary H","year":"2011","journal-title":"Chronic Illn"},{"key":"ref9","doi-asserted-by":"crossref","first-page":"186","DOI":"10.1097\/JNN.0b013e3182212a52","article-title":"Promoting excellence in end-of-life care: lessons learned from a cohort of nursing home residents with advanced Huntington disease","volume":"43","author":"Dellefield ME","year":"2011","journal-title":"J Neurosci Nurs"},{"key":"ref10","doi-asserted-by":"crossref","first-page":"77","DOI":"10.1186\/1750-1172-6-77","article-title":"Coordinated multidisciplinary care for ambulatory Huntington's disease patients. Evaluation of 18 months of implementation","volume":"6","author":"Veenhuizen RB","year":"2011","journal-title":"Orphanet J Rare Dis"},{"key":"ref11","first-page":"RRN1206","article-title":"Utilisation of healthcare and associated services in Huntington's disease: a data mining study","volume":"3","author":"Busse M","year":"2011","journal-title":"PLoS Curr Huntington Dis"}],"container-title":["Arquivos de Neuro-Psiquiatria"],"original-title":[],"link":[{"URL":"http:\/\/www.scielo.br\/pdf\/anp\/v71n6\/0004-282X-anp-71-06-368.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2017,5,27]],"date-time":"2017-05-27T12:09:17Z","timestamp":1495886957000},"score":1,"resource":{"primary":{"URL":"http:\/\/www.scielo.br\/scielo.php?script=sci_arttext&pid=S0004-282X2013000600368&lng=en&tlng=en"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2013,6]]},"references-count":11,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2013,6]]}},"alternative-id":["S0004-282X2013000600368"],"URL":"https:\/\/doi.org\/10.1590\/0004-282x20130040","relation":{},"ISSN":["0004-282X"],"issn-type":[{"value":"0004-282X","type":"electronic"}],"subject":[],"published":{"date-parts":[[2013,6]]}}}