{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,19]],"date-time":"2026-05-19T12:49:45Z","timestamp":1779194985386,"version":"3.51.4"},"reference-count":40,"publisher":"Cambridge University Press (CUP)","issue":"5","license":[{"start":{"date-parts":[[2019,5,17]],"date-time":"2019-05-17T00:00:00Z","timestamp":1558051200000},"content-version":"unspecified","delay-in-days":16,"URL":"https:\/\/www.cambridge.org\/core\/terms"},{"start":{"date-parts":[[2019,5,17]],"date-time":"2019-05-17T00:00:00Z","timestamp":1558051200000},"content-version":"unspecified","delay-in-days":16,"URL":"https:\/\/www.cambridge.org\/core\/terms"}],"content-domain":{"domain":["www.cambridge.org"],"crossmark-restriction":true},"short-container-title":["Cardiol Young"],"published-print":{"date-parts":[[2019,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec id=\"S1047951119000787_as1\" sec-type=\"objective\"><jats:title>Objective:<\/jats:title><jats:p>We developed the <jats:bold>L<\/jats:bold>ong-term <jats:bold>Ea<\/jats:bold>rly <jats:bold>De<\/jats:bold>velopment <jats:bold>R<\/jats:bold>esearch (LEADER) project to investigate the development of children with CHD and\/or after cardiopulmonary resuscitation. Both populations are at risk for delays in motor, cognitive, and language development. However, few studies to date have investigated the longitudinal development in these children.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951119000787_as2\" sec-type=\"methods\"><jats:title>Methods:<\/jats:title><jats:p>To establish a clinical research unit, we planned three studies: a cross-sectional study in children after cardiopulmonary resuscitation (LEADER-REA Pilot Study), a longitudinal study in children after cardiopulmonary resuscitation, with a focus on evaluating various biomarkers as predictors for developmental outcome (LEADER-CPR study), and a longitudinal study in children with ventricular septal defect, tetralogy of Fallot, or transposition of the great arteries after cardiac surgery (LEADER-CHD study).<\/jats:p><\/jats:sec><jats:sec id=\"S1047951119000787_as3\" sec-type=\"results\"><jats:title>Results:<\/jats:title><jats:p>Implementation of all three LEADER studies was successful and study protocols were conducted as planned. Findings from the LEADER-REA Pilot study have been recently published and data collection for both prospective trials is ongoing. Descriptive analysis of the first 20 assessments of the LEADER-CHD study showed no severe deficits in overall cognitive, motor, and language developments in the children.<\/jats:p><\/jats:sec><jats:sec id=\"S1047951119000787_as4\" sec-type=\"conclusions\"><jats:title>Conclusions:<\/jats:title><jats:p>Children with CHD and\/or after cardiopulmonary resuscitation are at risk for developmental delay. Therefore, a detailed developmental assessment is necessary as a pre-requisite for individual developmental support. Our LEADER project has been shown to be feasible in a clinical setting and is the first step towards the establishment of a clinical research unit in our clinic with a focus on longitudinal research.<\/jats:p><\/jats:sec>","DOI":"10.1017\/s1047951119000787","type":"journal-article","created":{"date-parts":[[2019,5,17]],"date-time":"2019-05-17T03:53:13Z","timestamp":1558065193000},"page":"672-678","update-policy":"https:\/\/doi.org\/10.1017\/policypage","source":"Crossref","is-referenced-by-count":1,"title":["First steps to a clinical research unit for developmental research in paediatric cardiology: conception and progress of the LEADER project (Long Term Early Development Research) in CHD"],"prefix":"10.1017","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-1956-5573","authenticated-orcid":false,"given":"Constanze","family":"Pfitzer","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hannah","family":"Ferentzi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Lisa-Maria","family":"Rosenthal","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Peter","family":"Kramer","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Felix","family":"Berger","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Katharina R. 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