PurposeIndividuals with sex chromosome aneuploidies (SCAs) are born with an atypical number of X and/or Y chromosomes, and present with a range of medical, developmental, educational, behavioral, and psychological concerns. Rates of SCA diagnoses in infants and children are increasing, and there is a need for specialized interdisciplinary care to address associated risks. The eXtraordinarY Kids Clinic was established to provide comprehensive and experienced care for children and adolescents with SCA, with an interdisciplinary team composed of developmental–behavioral pediatrics, endocrinology, genetic counseling, child psychology, pediatric neuropsychology, speech–language pathology, occupational therapy, nursing, and social work. The clinic model includes an interdisciplinary approach to care, where assessment results by each discipline are integrated to develop unified diagnostic impressions and treatment plans individualized for each patient. Additional objectives of the eXtraordinarY Kids Clinic program include prenatal genetic counseling, research, education, family support, and advocacy.MethodsSatisfaction surveys were distributed to 496 patients, and responses were received from 168 unique patients.ResultsSatisfaction with the overall clinic visit was ranked as “very satisfied” in 85%, and as “satisfied” in another 9.8%. Results further demonstrate specific benefits from the clinic experience, the importance of a knowledgeable clinic coordinator, and support the need for similar clinics across the country. Three case examples of the interdisciplinary approach to assessment and treatment are included.
ABSTRACT:Virtual Leodium is an interdisciplinary project aiming to develop an archaeological information system based on a city scale model. The first part of the paper describes current project's achievements; the general methodology and the workflow of the project, namely the production and the modelling of archaeological data; the prototype functions of the ad hoc developed archaeological information system. The second part of the paper presents our new Virtual Leodium archaeological information modelling approach, which aims at consider, in a more comprehensive way, the complexity of archaeological information.
This article describes the context and design of heiMAP, a virtual research environment (VRE) currently under development at Heidelberg University. heiMAP is aimed at users from a wide spectrum of disciplines within the Humanities, allowing them to collaborate and share data using space as their common frame of reference by way of a collaborative web platform. We first set out the challenges that spatial research in the Humanities poses for such a working platform, including but not limited to reflecting the often heterogeneous and imperfect nature of Humanities data in a Geographic Information System (GIS). Next, we give an overview of some existing VREs and detail where heiMAP fits into this context and show what makes it a worthwhile addition to the existing research landscape. Finally, we revisit the initially outlined challenges and showcase heiMAP’s approaches to address them.
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