{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,18]],"date-time":"2026-08-18T00:46:49Z","timestamp":1787014009141,"version":"build-2736575974"},"reference-count":43,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2012,12,7]],"date-time":"2012-12-07T00:00:00Z","timestamp":1354838400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Clinical Genetics"],"published-print":{"date-parts":[[2013,9]]},"abstract":"<jats:p>\n                    Little is known about the aging process of people with specific syndromes, like Rett syndrome (\n                    <jats:styled-content style=\"fixed-case\">RTT<\/jats:styled-content>\n                    ). Recognition of the clinical and behavioral characteristics of the adult\n                    <jats:styled-content style=\"fixed-case\">RTT<\/jats:styled-content>\n                    is needed in order to improve future management of the\n                    <jats:styled-content style=\"fixed-case\">RTT<\/jats:styled-content>\n                    girl and counseling of parents. In association with the Dutch\n                    <jats:styled-content style=\"fixed-case\">RTT<\/jats:styled-content>\n                    parent association, a 5\u2010year longitudinal study was carried out. The study population consisted of 53 adult women with a clinical diagnosis of\n                    <jats:styled-content style=\"fixed-case\">RTT<\/jats:styled-content>\n                    . Postal questionnaires were sent, including demographic features, skills, physical and psychiatric morbidity. At the time of the second measurement seven women had died. In 2012, 80% of the questionnaires (37\/46) were returned. Mean age of the women was 31.4\u2009years. Molecular confirmation was possible for 83% of the women for whom analyses were carried out. The adult\n                    <jats:styled-content style=\"fixed-case\">RTT<\/jats:styled-content>\n                    woman has a more or less stable condition. The general disorder profile is that of a slow on\u2010going deterioration of gross motor functioning in contrast to a better preserved cognitive functioning, less autonomic and epileptic features and good general health. This is the first longitudinal cohort study about aging in\n                    <jats:styled-content style=\"fixed-case\">RTT<\/jats:styled-content>\n                    . Continuing longitudinal studies are needed to gain more insight into the aging process in\n                    <jats:styled-content style=\"fixed-case\">RTT<\/jats:styled-content>\n                    .\n                  <\/jats:p>","DOI":"10.1111\/cge.12063","type":"journal-article","created":{"date-parts":[[2012,11,20]],"date-time":"2012-11-20T08:49:18Z","timestamp":1353401358000},"page":"223-229","source":"Crossref","is-referenced-by-count":42,"title":["Aging in Rett syndrome: a longitudinal study"],"prefix":"10.1111","volume":"84","author":[{"given":"NSJ","family":"Halbach","sequence":"first","affiliation":[{"name":"Department of Clinical Genetics"},{"name":"Rett Expertise Center GKC\u2010"},{"name":"Governor Kremers Center Maastricht University Medical Center  Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"EEJ","family":"Smeets","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics"},{"name":"Rett Expertise Center GKC\u2010"},{"name":"Governor Kremers Center Maastricht University Medical Center  Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"C","family":"Steinbusch","sequence":"additional","affiliation":[{"name":"Governor Kremers Center Maastricht University Medical Center  Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"MA","family":"Maaskant","sequence":"additional","affiliation":[{"name":"Governor Kremers Center Maastricht University Medical Center  Maastricht The Netherlands"},{"name":"Pergamijn  Echt The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"D","family":"van Waardenburg","sequence":"additional","affiliation":[{"name":"Rett Expertise Center GKC\u2010"},{"name":"Department of Pediatrics Maastricht University Medical Center  Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"LMG","family":"Curfs","sequence":"additional","affiliation":[{"name":"Department of Clinical Genetics"},{"name":"Rett Expertise Center GKC\u2010"},{"name":"Governor Kremers Center Maastricht University Medical Center  Maastricht The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2012,12,7]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2788.2000.00280.x"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1468-3148.2002.00115.x"},{"key":"e_1_2_7_4_1","first-page":"26","article-title":"Aging with mental retardation: increasing population of older adults with MR require health interventions and prevention strategies","volume":"60","author":"Fisher K","year":"2005","journal-title":"Geriatrics"},{"issue":"8","key":"e_1_2_7_5_1","first-page":"30","article-title":"Healthcare issues in aging adults with intellectual and other developmental disabilities","volume":"17","author":"Tyler CV","year":"2009","journal-title":"Clin Geriatr"},{"key":"e_1_2_7_6_1","first-page":"59","article-title":"Major health risks in aging persons with intellectual disabilities: an overview of recent studies","volume":"7","author":"Haveman M","year":"2010","journal-title":"J Intellect Disabil Res"},{"key":"e_1_2_7_7_1","unstructured":"JanickiMPandBreitenbachN. 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