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Item does not contain fulltext, AIM: Total colonic aganglionosis (TCA) is a severe form of Hirschsprung's disease (HD) associated with a high morbidity. This study assessed long-term functional outcome and quality of life (QoL) of patients with TCA in a national consecutive cohort. METHODS: Surgical and demographic characteristics in the medical records of all patients (n = 53) diagnosed with TCA between 1995 and 2015 were reviewed. Functional outcome of all nonsyndromal patients, aged >/= 4 years (n = 35), was assessed using a questionnaire and in medical records. Generic and disease-specific QoL were assessed using standardized validated questionnaires. RESULTS: Of 35 patients eligible for follow-up, 18 (51%) responded to the questionnaires. They were aged 4-19 years. A Duhamel procedure was performed in 67% of these patients and a Rehbein procedure was performed in 33%. In the questionnaire, 65% of the patients reported constipation, 47% faecal incontinence and 53% soiling. Moreover, 18% of patients used bowel management (flushing or laxatives) and 29% had an adapted diet only. Children and adolescents with TCA had worse perception of their general health and were more limited by bodily pain and discomfort compared with healthy peers. Their quality of life is influenced most by frequent complaints of diarrhoea and other physical symptoms. CONCLUSION: Children and adolescents with TCA report lower health-related QoL compared with healthy peers, especially in the physical domain. We suggest standardized follow-up and prospective longitudinal future research on functionality and QoL of these patients.

Item does not contain fulltext, AIM: Total colonic aganglionosis (TCA) is a severe form of Hirschsprung's disease (HD) associated with a high morbidity. This study assessed long-term functional outcome and quality of life (QoL) of patients with TCA in a national consecutive cohort. METHODS: Surgical and demographic characteristics in the medical records of all patients (n = 53) diagnosed with TCA between 1995 and 2015 were reviewed. Functional outcome of all nonsyndromal patients, aged >/= 4 years (n = 35), was assessed using a questionnaire and in medical records. Generic and disease-specific QoL were assessed using standardized validated questionnaires. RESULTS: Of 35 patients eligible for follow-up, 18 (51%) responded to the questionnaires. They were aged 4-19 years. A Duhamel procedure was performed in 67% of these patients and a Rehbein procedure was performed in 33%. In the questionnaire, 65% of the patients reported constipation, 47% faecal incontinence and 53% soiling. Moreover, 18% of patients used bowel management (flushing or laxatives) and 29% had an adapted diet only. Children and adolescents with TCA had worse perception of their general health and were more limited by bodily pain and discomfort compared with healthy peers. Their quality of life is influenced most by frequent complaints of diarrhoea and other physical symptoms. CONCLUSION: Children and adolescents with TCA report lower health-related QoL compared with healthy peers, especially in the physical domain. We suggest standardized follow-up and prospective longitudinal future research on functionality and QoL of these patients.

Item does not contain fulltext, AIM: Total colonic aganglionosis (TCA) is a severe form of Hirschsprung's disease (HD) associated with a high morbidity. This study assessed long-term functional outcome and quality of life (QoL) of patients with TCA in a national consecutive cohort. METHODS: Surgical and demographic characteristics in the medical records of all patients (n = 53) diagnosed with TCA between 1995 and 2015 were reviewed. Functional outcome of all nonsyndromal patients, aged >/= 4 years (n = 35), was assessed using a questionnaire and in medical records. Generic and disease-specific QoL were assessed using standardized validated questionnaires. RESULTS: Of 35 patients eligible for follow-up, 18 (51%) responded to the questionnaires. They were aged 4-19 years. A Duhamel procedure was performed in 67% of these patients and a Rehbein procedure was performed in 33%. In the questionnaire, 65% of the patients reported constipation, 47% faecal incontinence and 53% soiling. Moreover, 18% of patients used bowel management (flushing or laxatives) and 29% had an adapted diet only. Children and adolescents with TCA had worse perception of their general health and were more limited by bodily pain and discomfort compared with healthy peers. Their quality of life is influenced most by frequent complaints of diarrhoea and other physical symptoms. CONCLUSION: Children and adolescents with TCA report lower health-related QoL compared with healthy peers, especially in the physical domain. We suggest standardized follow-up and prospective longitudinal future research on functionality and QoL of these patients.

The shebanq service is the first data service of ancient-data.org. Shebanq is a search engine for the Hebrew Bible, powered by the ETCBC4 linguistic database, formerly know as WIVU. The data is archived for open access, clicking the Sources menu or the DANS logo at the bottom will bring you to the treasure trove. Shebanq is open source. It consists of a webservice shemdros and a web application shebanq.

The shebanq service is the first data service of ancient-data.org. Shebanq is a search engine for the Hebrew Bible, powered by the ETCBC4 linguistic database, formerly know as WIVU. The data is archived for open access, clicking the Sources menu or the DANS logo at the bottom will bring you to the treasure trove. Shebanq is open source. It consists of a webservice shemdros and a web application shebanq.

We outline a paradigm to preserve results of digital scholarship, whether they are query results, feature values, or topic assignments. This paradigm is characterized by using annotations as multifunctional carriers and making them portable. The testing grounds we have chosen are two significant enterprises, one in the history of science, and one in Hebrew scholarship. The first one (CKCC) focuses on the results of a project where a Dutch consortium of universities, research institutes, and cultural heritage institutions experimented for 4 years with language techniques and topic modeling methods with the aim to analyze the emergence of scholarly debates. The data: a complex set of about 20.000 letters. The second one (DTHB) is a multi-year effort to express the linguistic features of the Hebrew bible in a text database, which is still growing in detail and sophistication. Versions of this database are packaged in commercial bible study software. We state that the results of these forms of scholarship require new knowledge management and archive practices. Only when researchers can build efficiently on each other's (intermediate) results, they can achieve the aggregations of quality data by which new questions can be answered, and hidden patterns visualized. Archives are required to find a balance between preserving authoritative versions of sources and supporting collaborative efforts in digital scholarship. Annotations are promising vehicles for preserving and reusing research results. Keywords annotation, portability, archiving, queries, features, topics, keywords, Republic of Letters, Hebrew text databases

Dataconversion for NWO project Circulation of Knowledge. This conversion is specific to the letters of Descartes. Source format the JapAM edition: plain unicode text with line numbers illustrations in gif taken from Oeuvres de Descartes, Adam and Tannery, 1911 Target format (pseudo) TEI, plus TeX-typeset formulas in gif, plus extra symbols in gif/png, plus same illustrations in gif. The Descartes letters were part of this project, which also contains letters by Hugo Grotius, Constantijn Huygens, Christiaan Huygens, Anthoni van Leeuwenhoek and others. The result of the project is the ePistolarium an online environment to do research on these letters. The data has been archived at DANS, and is Open Access available since 16 December 2013: The archived CKCC dataset at DANS has the persistent identifier urn:nbn:nl:ui:13-scpm-ji.

We outline a paradigm to preserve results of digital scholarship, whether they are query results, feature values, or topic assignments. This paradigm is characterized by using annotations as multifunctional carriers and making them portable. The testing grounds we have chosen are two significant enterprises, one in the history of science, and one in Hebrew scholarship. The first one (CKCC) focuses on the results of a project where a Dutch consortium of universities, research institutes, and cultural heritage institutions experimented for 4 years with language techniques and topic modeling methods with the aim to analyze the emergence of scholarly debates. The data: a complex set of about 20.000 letters. The second one (DTHB) is a multi-year effort to express the linguistic features of the Hebrew bible in a text database, which is still growing in detail and sophistication. Versions of this database are packaged in commercial bible study software. We state that the results of these forms of scholarship require new knowledge management and archive practices. Only when researchers can build efficiently on each other's (intermediate) results, they can achieve the aggregations of quality data by which new questions can be answered, and hidden patterns visualized. Archives are required to find a balance between preserving authoritative versions of sources and supporting collaborative efforts in digital scholarship. Annotations are promising vehicles for preserving and reusing research results. Keywords annotation, portability, archiving, queries, features, topics, keywords, Republic of Letters, Hebrew text databases

Dataconversion for NWO project Circulation of Knowledge. This conversion is specific to the letters of Descartes. Source format the JapAM edition: plain unicode text with line numbers illustrations in gif taken from Oeuvres de Descartes, Adam and Tannery, 1911 Target format (pseudo) TEI, plus TeX-typeset formulas in gif, plus extra symbols in gif/png, plus same illustrations in gif. The Descartes letters were part of this project, which also contains letters by Hugo Grotius, Constantijn Huygens, Christiaan Huygens, Anthoni van Leeuwenhoek and others. The result of the project is the ePistolarium an online environment to do research on these letters. The data has been archived at DANS, and is Open Access available since 16 December 2013: The archived CKCC dataset at DANS has the persistent identifier urn:nbn:nl:ui:13-scpm-ji.