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This study aims to develop a patient oriented, structured provisional model to improve transitional care for adolescents with<jats:italic>Mayer-Rokitansky-Kuester-Hauser-Syndrome<\/jats:italic>as an example for orphan diseases, where problems of access and continuity are even more complex. The study is funded by the German Federal Ministry of Education and Research (BMBF-Funding Code 01GY1125). The target patient group are young females with this disorder, treated at the Centre for Rare Genital Malformations in Women (ZSGF), University Hospital of Tuebingen. The study comprises five phases: an appraisal of literature, assessment of patients (<mml:math xmlns:mml=\"http:\/\/www.w3.org\/1998\/Math\/MathML\" id=\"M1\"><mml:mi>n<\/mml:mi><mml:mo>=<\/mml:mo><mml:mn>25<\/mml:mn><\/mml:math>), parents\u2019, partners\u2019, and health and social care providers\u2019 (<mml:math xmlns:mml=\"http:\/\/www.w3.org\/1998\/Math\/MathML\" id=\"M2\"><mml:mi>n<\/mml:mi><mml:mo>=<\/mml:mo><mml:mn>24<\/mml:mn><\/mml:math>) needs and experienced deficits in care and support in a qualitative approach, construction of a provisional model via scenario technique, followed by communicative validation (including interested public,<mml:math xmlns:mml=\"http:\/\/www.w3.org\/1998\/Math\/MathML\" id=\"M3\"><mml:mi>n<\/mml:mi><mml:mo>=<\/mml:mo><mml:mn>100<\/mml:mn><\/mml:math>), preference finding, and identification of patient-oriented quality aims for follow-up. Quantitative data from questionnaires and chart review (as sociodemographic data, nonresponder analysis, and preference rating) are worked up for descriptive statistics. The results provide a platform for the development of future multidisciplinary transitional intervention programs in orphan diseases.<\/jats:p>","DOI":"10.1155\/2014\/913842","type":"journal-article","created":{"date-parts":[[2014,12,3]],"date-time":"2014-12-03T16:03:38Z","timestamp":1417622618000},"page":"1-11","source":"Crossref","is-referenced-by-count":4,"title":["Development of a Provisional Model to Improve Transitional Care for Female Adolescents with a Rare Genital Malformation as an Example for Orphan Diseases"],"prefix":"10.1155","volume":"2014","author":[{"given":"Elisabeth","family":"Simoes","sequence":"first","affiliation":[{"name":"Centre of Women\u2019s Health, University Hospital Tuebingen, 72076 Tuebingen, Germany"},{"name":"Women\u2019s Health Research Institute, 72076 Tuebingen, Germany"},{"name":"Social Medicine Staff Unit, University Hospital Tuebingen, 72076 Tuebingen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Andrea","family":"Kronenthaler","sequence":"additional","affiliation":[{"name":"Institute of General Practice, University of Tuebingen, 72074 Tuebingen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christine","family":"Emrich","sequence":"additional","affiliation":[{"name":"Institute of Occupational and Social Medicine and Health Services Research, 72074 Tuebingen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Monika A.","family":"Rieger","sequence":"additional","affiliation":[{"name":"Institute of Occupational and Social Medicine and Health Services Research, 72074 Tuebingen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kristin Katharina","family":"Rall","sequence":"additional","affiliation":[{"name":"Centre of Women\u2019s Health, University Hospital Tuebingen, 72076 Tuebingen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Norbert","family":"Sch\u00e4ffeler","sequence":"additional","affiliation":[{"name":"Department of Psychosomatic Medicine and Psychotherapy, University Hospital Tuebingen, 72076 Tuebingen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hanna","family":"Hiltner","sequence":"additional","affiliation":[{"name":"Institute of General Practice, University of Tuebingen, 72074 Tuebingen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Esther","family":"Ueding","sequence":"additional","affiliation":[{"name":"Women\u2019s Health Research Institute, 72076 Tuebingen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sara Y.","family":"Brucker","sequence":"additional","affiliation":[{"name":"Centre of Women\u2019s Health, University Hospital Tuebingen, 72076 Tuebingen, Germany"},{"name":"Women\u2019s Health Research Institute, 72076 Tuebingen, Germany"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","reference":[{"key":"1","doi-asserted-by":"publisher","DOI":"10.1093\/rheumatology\/kel198"},{"year":"2014","key":"2"},{"key":"3","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2004.00440.x"},{"key":"7","doi-asserted-by":"publisher","DOI":"10.1093\/humrep\/dei381"},{"key":"8","doi-asserted-by":"crossref","first-page":"568","DOI":"10.1055\/s-0029-1185932","volume":"69","year":"2009","journal-title":"Geburtshilfe und Frauenheilkunde"},{"key":"9","doi-asserted-by":"publisher","DOI":"10.1007\/s00787-008-1016-x"},{"key":"10","doi-asserted-by":"publisher","DOI":"10.2839\/23199"},{"key":"12","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2012.12.014"},{"key":"13","doi-asserted-by":"publisher","DOI":"10.1258\/jhsrp.2011.011044"},{"key":"14","doi-asserted-by":"publisher","DOI":"10.1136\/adc.2010.202473"},{"key":"15","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2010.10.016"},{"key":"16","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2013-003591"},{"key":"17","doi-asserted-by":"publisher","DOI":"10.1016\/j.jadohealth.2014.08.006"},{"key":"18","doi-asserted-by":"publisher","DOI":"10.1016\/j.ejon.2014.07.007"},{"first-page":"61","volume-title":"Statements concerning citizen focus in the health system [Thesen zur B\u00fcrgerorientierung im Gesundheitswesen]","year":"2001","key":"19"},{"key":"20","doi-asserted-by":"publisher","DOI":"10.1186\/1472-6963-14-47"},{"key":"21","doi-asserted-by":"publisher","DOI":"10.1111\/j.1524-4733.2009.00603.x"},{"first-page":"165","volume-title":"Socialisation and construction of gender and youth. 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