Journal articles: 'Natural History Survey'

1

Jones, D. "The Natural History of a Survey." Journal of Epidemiology & Community Health 45, no. 3 (September 1, 1991): 254. http://dx.doi.org/10.1136/jech.45.3.254.

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Manzo, Silvia. "Francis Bacon's Natural History and Civil History: A Comparative Survey." Early Science and Medicine 17, no. 1-2 (2012): 32–61. http://dx.doi.org/10.1163/157338212x631774.

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AbstractThe aim of this paper is to offer a comparative survey of Bacon's theory and practice of natural history and of civil history, particularly centered on their relationship to natural philosophy and human philosophy. I will try to show that the obvious differences concerning their subject matter encompass a number of less obvious methodological and philosophical assumptions which reveal a significant practical and con ceptual convergence of the two fields. Causes or axioms are prescribed as the theoretical end-products of natural history, whereas precepts are envisaged as the speculative outcomes derived from perfect civil history. In spite of this difference, causes and precepts are thought to enable effective action in order to change the state of nature and of man, respectively. For that reason a number of common patterns are to be found in Bacon's theory and practice of natural and civil history.

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Anstey, Peter R. "Locke, Bacon and Natural History." Early Science and Medicine 7, no. 1 (2002): 65–92. http://dx.doi.org/10.1163/157338202x00036.

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AbstractThis paper argues that the construction of natural histories, as advocated by Francis Bacon, played a central role in John Locke's conception of method in natural philosophy. It presents new evidence in support of John Yolton's claim that "the emphasis upon compiling natural histories of bodies ... was the chief aspect of the Royal Society's programme that attracted Locke, and from which we need to understand his science of nature". Locke's exposure to the natural philosophy of Robert Boyle, the medical philosophy of Thomas Sydenham, his interest in travel literature and his conception of the division of the sciences are examined. From this survey, a cumulative case is presented which establishes, independently of an in-depth exegesis of his Essay Concerning Human Understanding, the central role for Locke of the construction of natural histories in natural philosophy.

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Bley, Annette, Cynthia Tifft, Susan Kahn, and Florian Eichler. "Natural history of infantile GM2 gangliosidosis — Survey of 97 patients." Molecular Genetics and Metabolism 102, no. 2 (February 2011): S9. http://dx.doi.org/10.1016/j.ymgme.2010.11.028.

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Bajaj, A., C. Vitali, M. Cuchel, and D. Rader. "Literature Survey Of Lcat Deficiency: Natural History And Biomarker Identification." Atherosclerosis 287 (August 2019): e227. http://dx.doi.org/10.1016/j.atherosclerosis.2019.06.697.

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Campanozzi, A., G. Boccia, L. Pensabene, F. Panetta, A. Marseglia, P. Strisciuglio, C. Barbera, G. Magazzu, M. Pettoello-Mantovani, and A. Staiano. "Prevalence and Natural History of Gastroesophageal Reflux: Pediatric Prospective Survey." PEDIATRICS 123, no. 3 (March 1, 2009): 779–83. http://dx.doi.org/10.1542/peds.2007-3569.

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Sabaj, Mark H., Kevin S. Cummings, and Lawrence M. Page. "Annotated Catalog of Type Specimens in the Illinois Natural History Survey Fish Collection." Illinois Natural History Survey Bulletin 35, no. 1-5 (October 31, 1997): 253–300. http://dx.doi.org/10.21900/j.inhs.v35.130.

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The Fish Collection of the Illinois Natural History Survey (INHS) dates back to the late 1800s and the extensive surveys of Illinois fishes led by Dr. Stephen A. Forbes, director of the Survey's predecessor, the Illinois State Laboratory of Natural History (ISLNH). From 1876 to 1903 Forbes, assisted by his esteemed colleague Robert E. Richardson and numerous field and laboratory personnel, collected and preserved over 200,000 specimens from more than 450 localities distributed in 93 of the 102 counties of Illinois. During this time, the ISLNH Collection served as the basis for several catalogs of Illinois fishes (Nelson 1876; Jordan 1878a; Forbes 1884; Large 1903), and provided material for the description of at least 25 species. This work culminated in the classic Fishes of Illinois written by Forbes and Richardson, published by the Survey in 1909 and reprinted in 1920 (although no publication date is given for the original volume, H.C. Oesterling, former INHS editor, lists the date as 1909 in Howard 1932:46). Accompanied by a separate atlas of distribution maps of 98 species, this comprehensive treatment of the state's ichthyofauna still is recognized as one of the finest publications on fishes. The INHS Fish Collection was expanded by Dr. Philip W. Smith, who worked as a systematic biologist at the Survey from 1942 until his retirement in 1979 (Burr and Page 1987). Over a period of 1 1 years from 1962 to 1972, Smith assembled a large collection of fishes from Illinois and neighboring states. The ichthyological surveys conducted by Smith, his students, and INHS staff led to the publication of a second Fishes of Illinois (Smith 1979). Smith's monograph provided identification keys, information on the ecology and taxonomy of Illinois fishes, and detailed distribution maps that documented changes in the state's fish fauna that had occurred since the survey of Forbes and Richardson. The size and geographic scope of the INHS collection have been considerably expanded in the past three decades; the collection now contains about 7 1 1 ,000 cataloged specimens (over 7 1 ,000 lots) of more than 1,800 species. A recent literature survey identified over 250 publications citing the use of INHS specimens over the past 40 years. Included are two publications that have greatly advanced both the professional and popular understanding of North American fishes: the Handbook of Darters (Page 1983) and A Field Guide to Freshwater Fishes of North America North of Mexico (Page and Burr 1991).

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Koziol, James A., Douglas C. Clark, Ruben F. Gittes, and Eng M. Tan. "The Natural History of Interstitial Cystitis: A Survey of 374 Patients." Journal of Urology 149, no. 3 (March 1993): 465–69. http://dx.doi.org/10.1016/s0022-5347(17)36120-7.

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Lucier, Paul. "New York State Natural History Survey: 1836-1842. Michele L. Aldrich." Isis 92, no. 4 (December 2001): 796–98. http://dx.doi.org/10.1086/385407.

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Cunningham, John A., David C. Hodgins, and Tony Toneatto. "Natural history of gambling problems: Results from a general population survey." SUCHT 55, no. 2 (January 2009): 98–103. http://dx.doi.org/10.1024/2009.02.05.

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Natürlicher Verlauf von problematischem Glücksspiel: Ergebnisse einer Allgemeinbevölkerungsstudie Fragestellung: Die Studie untersucht Gründe für eine Verhaltensänderung in einer Stichprobe früherer problematischer Glücksspieler. Methodik: In Ontario, Kanada, wurde an einer Zufallsstichprobe von 8.467 Erwachsenen eine telefonische Erhebung durchgeführt. Von den 450 Teilnehmern, die früher, nicht aber in den letzten 12 Monaten glücksspielbezogene Probleme hatten (n=450) wurden 130 Personen identifiziert, die sich an eine Zeitspanne erinnern konnten, in der sie mehr gespielt haben als aktuell und damals keine Therapie oder eine Selbsthilfegruppe in Anspruch genommen haben. Sie wurden nach den Gründen für das Aufhören oder weniger Spielen und zu ihren Ausstiegsstrategien befragt. Ergebnisse: Häufige Gründe waren Veränderungen im Leben durch Reifung (Umzug, Arbeitsplatz, Heirat) oder eine kognitive Neubewertung des Spielens. Spieler mit schwereren Problemen nannten häufiger Änderungsgründe, die mit negativen Konsequenzen des Spielens zusammen hingen. Schlussfolgerungen: Viele Menschen »driften« aus ihrem problematischen Spielen durch andere Veränderungen in ihrem Leben heraus. Forschung zum natürlichen Verlauf anhand repräsentativer Stichproben ist bedeutsam, da sie erlaubt, Gründe der Reifung und des Herauswachsens als zentral für die Überwindung von Glücksspielproblemen in vielen Fällen zu erkennen.

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Stefanko, Nicole S., Maria‐Laura Cossio, Julie Powell, Francine Blei, Olivia M. T. Davies, Ilona J. Frieden, Maria C. Garzon, et al. "Natural history of PHACE syndrome: A survey of adults with PHACE." Pediatric Dermatology 36, no. 5 (June 20, 2019): 618–22. http://dx.doi.org/10.1111/pde.13871.

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Amburgey, Kimberly, Etsuko Tsuchiya, Sabine de Chastonay, Michael Glueck, Rachel Alverez, Cam-Tu Nguyen, Anne Rutkowski, Joseph Hornyak, Alan H. Beggs, and James J. Dowling. "A natural history study of X-linked myotubular myopathy." Neurology 89, no. 13 (August 25, 2017): 1355–64. http://dx.doi.org/10.1212/wnl.0000000000004415.

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Objective:To define the natural history of X-linked myotubular myopathy (MTM).Methods:We performed a cross-sectional study that included an online survey (n = 35) and a prospective, 1-year longitudinal investigation using a phone survey (n = 33).Results:We ascertained data from 50 male patients with MTM and performed longitudinal assessments on 33 affected individuals. Consistent with existing knowledge, we found that MTM is a disorder associated with extensive morbidities, including wheelchair (86.7% nonambulant) and ventilator (75% requiring >16 hours of support) dependence. However, unlike previous reports and despite the high burden of disease, mortality was lower than anticipated (approximate rate 10%/y). Seventy-six percent of patients with MTM enrolled (mean age 10 years 11 months) were alive at the end of the study. Nearly all deaths in the study were associated with respiratory failure. In addition, the disease course was more stable than expected, with few adverse events reported during the prospective survey. Few non–muscle-related morbidities were identified, although an unexpectedly high incidence of learning disability (43%) was noted. Conversely, MTM was associated with substantial burdens on patient and caregiver daily living, reflected by missed days of school and lost workdays.Conclusions:MTM is one of the most severe neuromuscular disorders, with affected individuals requiring extensive mechanical interventions for survival. However, among study participants, the disease course was more stable than predicted, with more individuals surviving infancy and early childhood. These data reflect the disease burden of MTM but offer hope in terms of future therapeutic intervention.

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Robinson, John R., Issam A. Awad, and John R. Little. "Natural history of the cavernous angioma." Journal of Neurosurgery 75, no. 5 (November 1991): 709–14. http://dx.doi.org/10.3171/jns.1991.75.5.0709.

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✓ The incidence and natural history of the cavernous angioma have remained unclear in part because of the difficulty of diagnosing and following this lesion prior to surgical excision. The introduction of magnetic resonance (MR) imaging has improved the sensitivity and specificity of diagnosing and following this vascular malformation. Seventy-six lesions with an MR appearance typical of a presumed cavernous angioma were discovered in 66 patients among 14,035 consecutive MR images performed at the Cleveland Clinic between 1984 and 1989. Follow-up studies in 86% of the cases over a mean period of 26 months provided 143 lesion-years of clinical survey of this condition. The most frequent presenting features were seizure, focal neurological deficit, and headache. While most lesions exhibited evidence of occult bleeding on MR imaging, there was overt hemorrhage in seven of the 57 symptomatic patients and only one overt hemorrhage occurred during the follow-up interval. The annualized bleeding rate was 0.7%. Analysis of the hemorrhage group revealed a significantly greater risk of overt hemorrhage in females. Pathological confirmation of cavernous angioma was obtained in all 14 surgical cases. This information assists in rational therapeutic planning and prognosis in patients with MR images showing lesions suggestive of cavernous angioma.

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Crane, J. L., and Pamela P. Tazik. "Catalog of Types of the Illinois Natural History Survey Mycological Collections (ILLS)." Illinois Natural History Survey Bulletin 34, no. 1-6 (May 31, 1992): 535–50. http://dx.doi.org/10.21900/j.inhs.v34.136.

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The Survey's mycological collection now contains approximately 300 type specimens, 800 Myxomycetes, 1,200 lower fungi, 10.000 Ascomycetes, 13,200 Fungi Imperfecti, 17,000 Basidiomycetes. and 5.000 lichens, for a total of 47.500 specimens. This catalog provides information for each type specimen on the binomial, the full name and initials of the authorities, the place of publication, the category of type, substrate or host, locality data, date of collection, collector, and accession number. The categories of type specimens follow the Botanical Code (Grueter et al. 1988. Article 7).

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Deegan, P. B. "Natural history of Fabry disease in females in the Fabry Outcome Survey." Journal of Medical Genetics 43, no. 4 (September 9, 2005): 347–52. http://dx.doi.org/10.1136/jmg.2005.036327.

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Long, Joan C. "The History of Rubber—A Survey of Sources about the History of Rubber." Rubber Chemistry and Technology 74, no. 3 (July 1, 2001): 493–508. http://dx.doi.org/10.5254/1.3547648.

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Abstract This paper is a bibliographic survey of the major sources of information about historical aspects of rubber and rubber products that appeared in the 20th century. These sources, primarily those in the English language, on various aspects of rubber history have been categorized according to whether the emphasis is on natural or synthetic rubber, general rubber history and processing, rubber organizations, and people and companies that have played an important role. A section on the history of tires is included.

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BECKETT, JOHN, and CHARLES WATKINS. "Natural History and Local History in Late Victorian and Edwardian England: The Contribution of the Victoria County History." Rural History 22, no. 1 (March 7, 2011): 59–87. http://dx.doi.org/10.1017/s0956793310000142.

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AbstractIn 1899 the Victoria County History (VCH) was established as a ‘National Survey’ of England which was intended to show the present day condition of the country and trace the ‘domestic history’ of all English counties to the ‘earliest times’. Natural history was seen as a key component to be included in the first volume for every county. In this paper we examine the reasons for the prominence given to natural history and demonstrate how the expert knowledge of natural historians was marshalled and edited. We use the contrasting counties of Herefordshire and Nottinghamshire to examine key intellectual debates about the role of the amateur and the expert and concern about nomenclature, classification and the state of knowledge about different groups of species. We emphasize the importance of the geography of the natural history and the way in which the VCH charted concerns about species loss and extinction. We examine the reasons why the VCH later abandoned natural history and finally we assess the value of its published output for modern historical geographers, historical ecologists and environmental historians.

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Menon, Minakshi. "Transferrable Surveys: Natural History from the Hebrides to South India." Journal of Scottish Historical Studies 38, no. 1 (May 2018): 143–59. http://dx.doi.org/10.3366/jshs.2018.0238.

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In 1807 the English East India Company published a report by Dr Francis Buchanan (1762–1829), a Scottish medic in its employ. The report, titled A Journey from Madras, marked an important moment in colonial savoir faire – the emergence of the statistical survey as a form of natural historical knowledge-making in colonial India. What is not generally known is that Buchanan, who received his MD from the University of Edinburgh, had learnt the procedures he employed in his report in the natural history course taught there by the Rev. John Walker (1731–1803). This chapter seeks to explain why and how Walker's teaching travelled to India with Buchanan, and helped him justify British colonisation of south India.

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Dougherty, Ryan F., Lauren D. Quinn, A. Bryan Endres, Thomas B. Voigt, and Jacob N. Barney. "Natural History Survey of the Ornamental Grass Miscanthus sinensis in the Introduced Range." Invasive Plant Science and Management 7, no. 1 (March 2014): 113–20. http://dx.doi.org/10.1614/ipsm-d-13-00037.1.

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AbstractMiscanthus sinensis is a perennial grass native to Asia, but since its introduction to the United States in the late 19th century, it has become both a major ornamental crop and invasive species. Previous studies of the ecology of M. sinensis in both its introduced and native ranges have suggested that it may be occupying a novel ecological niche in the introduced range. Miscanthus sinensis and its daughter species, Miscanthus × giganteus, are under evaluation as bioenergy crops; therefore, characterization of the ecology and environmental niche of M. sinensis is essential to mitigate the risk of fostering future invasion in the United States. In July 2011, we surveyed 18 naturalized M. sinensis populations spanning the U.S. distribution, covering a 6° latitudinal gradient from North Carolina to Massachusetts. Miscanthus sinensis populations ranged in size from 3 to 181,763 m2 with densities between 0.0012 and 2.2 individuals m−2, and strongly favored highly disturbed and unmanaged habitats such as roadsides and forest edges. Population size and individual plant morphology (i.e., tiller height, basal diameter, and tiller number) were not affected by soil characteristics and nutrient availability, though increased tree canopy cover was associated with reduced population size (P < 0.0001). Plant size and vigor were not significantly affected by low light availability, which supports previous suggestions of shade tolerance of M. sinensis. In summary, M. sinensis can tolerate a broad range of climatic conditions, light availability, and nutrient availability in the eastern United States, suggesting risk of further invasion beyond its current distribution in the United States.

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Schoemans, Helene M., Koen Theunissen, Marc Boogaerts, and Johan Maertens. "Natural History of Post-Allogeneic HSCT EBV-Reactivation: A Single Center Retrospective Survey." Blood 106, no. 11 (November 16, 2005): 3232. http://dx.doi.org/10.1182/blood.v106.11.3232.3232.

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Abstract Epstein Barr Virus (EBV) reactivation occurs in about 50% of the allogeneic hematopoietic stem cell transplantation (HSCT) population in the first year post-transplantation. About 1-7% of these patients run the risk of developing a post-transplant lymphoproliferative disorder (PTLD). Several authors have thus advocated systematic screening by EBV real time PCR (RT-PCR) to initiate pre-emptive treatment of reactivations using Rituximab (van Esser 2002). However, the positive predictive value of EBV RT-PCR is only of 40% (van Esser 2001), implying that this algorithm overtreats a number of patients. Methods: We have retrospectively analyzed 60 consecutive allogeneic HSCT patients transplanted in our center between 1/1/2004 and 31/3/2005. Four patients were excluded because of absence of EBV follow-up (n=2) or autologous reconstitution (n=2). EBV reactivation (EBV (+)) was defined by at least two consecutive episodes of EBV RT-PCR above 1000 copies/ml of whole blood. Any other result was considered as negative (EBV (−)). Results: 1175 EBV RT-PCR samples were collected over a median follow up of 215 days (range: 21–511). The population observed was essentially adults (median age 42 years, range: 1–65) with leukemia (29 leukemia, 11 lymphomas, 16 other diseases), mixed graft types (26 matched sibling donors, 26 matched unrelated donors, 4 haploidentical donors; 77% peripheral blood stem cells; 20% CD34+ selection) and mixed conditioning (52% non-myeloablative conditioning containing ATG, and 48% full conditioning). The EBV(+) and EBV(−) cohorts were similar for all characteristics analyzed. We observed a median of 18 EBV RT-PCR per patient (range: 4–105), with a median interval between two tests of 7 days (range: 3–45). There were 30 true reactivations, 2 intermittent reactivations (non consecutive EBV titer rises above threshold), 8 isolated reactivations and 16 patients with no reactivation episode. EBV RT-PCR was first performed at a median of 6 days post HSCT (range: 0–245), and reactivation was noted at a median of 44 days post HSCT (range: 6–375). There were no significant difference in PCR follow up (first day of screening, median test interval and length of biological follow up) except for the total number of screening tests per patient, which was higher in the EBV(+) group (p= 0.01). There was only one case of biopsy-proven PTLD in the EBV(+) cohort. No patient was administered Rituximab post- HSCT. Survival curves of the two cohorts were similar regardless of EBV reactivation (log-rank, p= 0.201). Discussion: The incidence of EBV reactivation (n= 30; 54%) and of PTLD (n=1;1.7%) were standard compared to previous studies, resulting in a standard specificity of 47% for EBV screening. However, within our limited group of patients, we could not show any significant differences in mortality between the EBV(+) and EBV (−) cohorts. Therefore, absence of preventive treatment for EBV reactivation did not result in an increase in mortality in our EBV reactivating cohort. This suggests that systematic prophylactic use of Rituximab may not affect overall mortality, whilst potentially increasing the risk of other opportunistic infections. Conclusion: Further prospective studies are needed to better define the patients at risk for developing EBV-related PTLD, within the EBV reactivating allogeneic transplant patients group, before prophylactic treatment of reactivation becomes a routine procedure.

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Linnie, Martyn Joseph. "Pest control: A survey of natural history museums in Great Britain and Ireland." International Journal of Museum Management and Curatorship 6, no. 3 (September 1987): 277–90. http://dx.doi.org/10.1080/09647778709515078.

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Linnie, M. "Pest control A survey of natural history museums in Great Britain and Ireland." Museum Management and Curatorship 6, no. 3 (September 1987): 277–90. http://dx.doi.org/10.1016/0260-4779(87)90034-3.

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Perko, Mario J., Torben V. Schroeder, Peter S. Olsen, Leif P. Jensen, and Jørgen E. Lorentzen. "Natural History of Abdominal Aortic Aneurysm: A Survey of 63 Patients Treated Nonoperatively." Annals of Vascular Surgery 7, no. 2 (March 1993): 113–16. http://dx.doi.org/10.1007/bf02001003.

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Stapf, Christian, Jay P. Mohr, John Pile-Spellman, Robert A. Solomon, Ralph L. Sacco, and E. Sander Connolly. "Epidemiology and natural history of arteriovenous malformations." Neurosurgical Focus 11, no. 5 (November 2001): 1–5. http://dx.doi.org/10.3171/foc.2001.11.5.2.

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The epidemiology and natural history of cerebral arteriovenous malformations (AVMs) remains incompletely elucidated. Several factors are responsible. With regard to the incidence and prevalence of AVMs, the results of prior studies have suffered because of the retrospective design, the use of nonspecific ICD-9 codes, and a focus on small genetically isolated populations. Recent data from the New York Islands AVM Hemorrhage Study, an ongoing, prospective, population-based survey determining the incidence of AVM-related hemorrhage and the associated rates of morbidity and mortality in a zip code–defined population of 10 million people, suggests that the AVM detection rate is 1.21/100,000 person-years (95% confidence interval [CI] 1.02–1.42) and the incidence of AVM-hemorrhage is 0.42/100,000 person-years (95% CI 0.32–0.55). Contemporaneous data from the Northern Manhattan Stroke Study, a prospective, longitudinal population-based study of nearly 150,000 patients in which the focus is to define the incidence of stroke, suggest the crude incidence for first-ever AVM-related hemorrhage to be 0.55/100,000 person-years (95% CI 0.11–1.61). Efforts are ongoing to study the natural history of both ruptured and unruptured AVMs in these datasets to examine the relevance of prior studies of patients selected for conservative follow up in Finland. In addition, data are being gathered to determine whether risk factors for future hemorrhage, which have previously been established in small case series, are valid when applied to whole populations. Together, these data should help inform therapeutic decisionmaking.

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Boardman, HF, E. Thomas, DS Millson, and PR Croft. "The Natural History of Headache: Predictors of Onset and Recovery." Cephalalgia 26, no. 9 (September 2006): 1080–88. http://dx.doi.org/10.1111/j.1468-2982.2006.01166.x.

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The objective of this study was to determine predictors of onset of new headache episodes and recovery from headache over one year. A population-based cohort study was conducted, comprising a baseline postal survey to a random sample of adults aged ≥18 years, with follow-up survey after 1 year. Risk factor data at baseline were compared with headache status at follow-up in two groups: (i) those free of recent headache at baseline and (ii) those with a recent headache at baseline. In respondents free of recent headache at baseline, previous headache [risk ratio (RR) 4.15], the presence of other pain at baseline (RR 1.43), severe sleep problems (RR 1.67) and drinking caffeine (RR 1.99) increased the risk of a new headache episode during the follow-up year. In respondents with recent headache at baseline, less severe headaches at baseline predicted recovery during the follow-up year, as did the absence of anxiety [recovery ratio (ReR) 2.84] and of sleep problems (ReR 2.77). Risks for increased headache-related disability reflected those for onset of a new episode and these risks increased in strength for large increases in disability. Sleep problems and caffeine consumption increase the risk of developing headache and thus provide targets for prevention. Low levels of anxiety, sleep problems and the absence of other pain improve the likelihood of recovering and remaining free from headache.

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Phillips, Sarah, Elspeth Haston, Laura Green, Marie-Helene Weech, Robert Cubey, Sally King, and Robyn Drinkwater. "State of Digitisation and Gap Analysis Surveys." Biodiversity Information Science and Standards 2 (April 18, 2018): e25969. http://dx.doi.org/10.3897/biss.2.25969.

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Recent developments in digitisation technologies and equipment have enabled advances in the rate of natural history specimen digitisation. However Europe’s Natural History Collection Institutions are home to over one billion specimens and currently only a small fraction of these have been digitally catalogued with fewer imaged. It is clear that institutions still face huge challenges when digitising the vast number of specimens in their collections. I will present the results of two surveys that aimed to discover the main successes and challenges facing institutions in their digitisation programmes. The first survey was undertaken in 2014 within the SYNTHESYS 3 project and gathered information from project partners on their current digitisation facilities, equipment and workflows providing some key recommendations based on these findings. The second survey was completed more recently in 2017, through the Consortium of European Taxonomic Facilities (CETAF) Digitisation Working Group. This survey aimed to discover the successful protocols and implementation of digitisation, and to identify the shortfalls in resources and protocols. Results from both surveys will be fed into the future programme of the CETAF Digitisation Working Group as well as forthcoming and proposed EU projects, including Innovation and Consolidation for large-scale Digitisation of natural heritage (ICEDIG).

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Donadieu, Jean, Marie Lamant, Claire Fieschi, Flore Sicre de Fontbrune, Aurélie Caye, Marie Ouachee, Blandine Beaupain, et al. "Natural history of GATA2 deficiency in a survey of 79 French and Belgian patients." Haematologica 103, no. 8 (May 3, 2018): 1278–87. http://dx.doi.org/10.3324/haematol.2017.181909.

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Silvestris, N., S. Leo, T. Di Palma, F. De Vita, T. Gamucci, S. Barni, R. Ferrara, C. Mazzara, G. Numico, and G. Colucci. "Natural History of Bone Metastasis in Gastric Cancer: Results of an Italian Multicenter Survey." Annals of Oncology 23 (September 2012): ix229. http://dx.doi.org/10.1016/s0923-7534(20)33260-9.

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Halligan, Rebecca, Fiona J. White, Bernd Schwahn, Karolina M. Stepien, Nazreen Kamarus Jaman, Mel McSweeney, Steve Kitchen, et al. "The natural history of glycogen storage disease type Ib in England: A multisite survey." JIMD Reports 59, no. 1 (January 24, 2021): 52–59. http://dx.doi.org/10.1002/jmd2.12200.

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Kruse, Alexandra, Caroline Kruse, and Michele P. Lambert. "The ITP Natural History Study Registry: Preliminary Findings on the Immune Thrombocytopenia Patient Experience." Blood 132, Supplement 1 (November 29, 2018): 4979. http://dx.doi.org/10.1182/blood-2018-99-118824.

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Abstract Background Although significant advances have been made over the past 10 years in the treatment of Immune Thrombocytopenia (ITP), challenges remain in addressing the burden of disease and unmet needs of patients. In rare diseases especially, natural history studies and patient registries are crucial in establishing baseline information and identifying patient-reported outcomes. Aims The registry collects data on the natural progression of ITP, and characterizes the ITP population as a whole. This preliminary analysis seeks to provide an abridged overview of registry findings. Methods The ITP Registry enrolled 843 patients (pts), 742 completed the consent process [table 1]. Pts completed a set of surveys on demographics, medical and diagnostic data, treatments (tx), and quality of life, with 172 total questions for adults and 141 for children. Of 742 consented pts, 475 (64%) completed >1 surveys. 307 pts completed all surveys. Results Pts were 90.3% caucasian and 76.4% female. 86.5% live in the United States. 69.3% of pts were formally diagnosed with ITP <1 yr of experiencing symptoms of petechiae, purpura, or mucosal bleeding (range 1-42 yrs). Avg. age at diagnosis was 32 yrs (0-72), although avg. current age for registry pts is 38 (0-100). Avg. duration of disease is 12 ½ yrs, (0-69). An avg. of 4 (1-10) diagnostic tests are performed to confirm diagnosis [figure 1]. Only 9 pts were diagnosed with another disorder in addition to their ITP. 329 pts who completed the Treatment survey received a total of 1,008 ITP txs (avg. 3; range 1-14), almost half of pts were treated with ≥3 different txs over the course of their disease. 46/329 pts (14%) received ≥6 txs, double the avg. number of txs. Almost half (45%) currently receive tx, but this does not take into consideration whether pts are in remission. 285 (86.6%) pts received steroids. 137 (41.6%) received IVIG. Almost 1/3 received rituximab (31.9%). 121 (36.8%) were treated with thrombopoietic agents; pts also received anti-d, antibiotics, decadron, rituximab, or another tx for their ITP [figure 2]. 23.7% had undergone splenectomy. Every pt visited a physician at least once in the past year. ITP pts visit their physicians on avg. 7 times/year, 42.6% of pts consult their doctor ≥10 times/year. 64% of pts were hospitalized because of their ITP. Of these pts, 39.8% had been hospitalized within the past year; this may include in-patient txs. Most of the adult pts who completed the quality of life (QoL) surveys felt their QoL is good; 1/5 said poor or fair. During the past month, 1/4 pts claimed their overall health was poor or fair, 2/3 said good or very good, 10% said excellent. 62% of pts rate their mental health as good or very good. 82% felt bothered by emotional problems such as feeling anxious, depressed, or irritable in the past week. 64% of pts felt anxious in the past week. Over half of pts report feelings of depression. A similar trend to mental health was seen in pts' physical health: 65% said their physical health was good or very good. However, 90% said pain interferes with their QoL. 88% experienced fatigue that week due to their ITP. 38 parents completed the QoL survey on behalf of their child, although not all questions were answered by each respondent. 16/19 parents said their child's overall health was good or very good. 63% of children were bothered by emotional problems. 29/38 parents said their child feels nervous about their ITP. A majority of children got tired easily due to their ITP; 27/38 children were sometimes, often or always tired. Less than half (15/38) experienced pain from their ITP in the last week, with 6/15 children rating their pain as "greater than 5" on a scale of 1-10 (10= worst pain). 22/38 parents say their child has been physically able to do the activities they enjoy most with no trouble. Discussion We focused on general questions across surveys, especially on topics most important to ITP patients. Completion of surveys was hindered by the time and effort needed to answer survey questions. In the future, we hope that completion of the remaining surveys will continue, helping us to examine differences in disease experience across sub-populations. This overview will assist the ITP community with the development of recommendations for standards of care, assist researchers studying the pathophysiology of ITP and interventional outcomes, and support the design of clinical trials for new treatments. Disclosures Kruse: Amgen/ITP: Consultancy; Novartis/ITP: Consultancy; Rigel/ITP: Honoraria. Lambert:Educational Concepts in Medicine: Consultancy; Summus: Consultancy; Amgen: Membership on an entity's Board of Directors or advisory committees; Shionogi: Consultancy; Bayer: Membership on an entity's Board of Directors or advisory committees; Sysmex: Consultancy; Rigel: Consultancy; CSL: Consultancy; Novartis: Membership on an entity's Board of Directors or advisory committees.

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Koga, H., G. Omori, T. Mochizuki, K. Nishino, S. Takagi, Y. Tomiyama, T. Shima, Y. Koga, and O. Tanifuji. "Natural history of knee osteoarthritis for 40 years from the matsudai knee osteoarthritis survey, Japan." Osteoarthritis and Cartilage 28 (April 2020): S432. http://dx.doi.org/10.1016/j.joca.2020.02.671.

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Fazio, N., P. Maisonneuve, A. M. Frezza, T. Ibrahim, A. La Salvia, S. Tafuto, S. Pusceddu, et al. "Bone metastases in patients with neuroendocrine neoplasms: A survey of natural history and clinical management." Annals of Oncology 28 (September 2017): v149. http://dx.doi.org/10.1093/annonc/mdx368.020.

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Kanwar, G., L. Camellini, R. Conigliaro, R. Sassatelli, F. Azzolini, V. Iori, A. Messerotti, M. Wallace, T. Woodward, and M. Raimondo. "PA.201 THE NATURAL HISTORY OF UPPER GASTROINTESTINAL SUBEPITHELIAL TUMORS: A MULTICENTER ENDOSCOPIC ULTRASOUND SURVEY." Digestive and Liver Disease 40 (March 2008): S149. http://dx.doi.org/10.1016/s1590-8658(08)60396-5.

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El Abiad, Jad M., Sarah M. Robbins, Bernard Cohen, Adam S. Levin, David L. Valle, Carol D. Morris, and Nara L. Macena Sobreira. "Natural history of Ollier disease and Maffucci syndrome: Patient survey and review of clinical literature." American Journal of Medical Genetics Part A 182, no. 5 (March 7, 2020): 1093–103. http://dx.doi.org/10.1002/ajmg.a.61530.

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Labauge, P., L. Horzinski, X. Ayrignac, P. Blanc, S. Vukusic, D. Rodriguez, F. Mauguiere, et al. "Natural history of adult-onset eIF2B-related disorders: a multi-centric survey of 16 cases." Brain 132, no. 8 (July 22, 2009): 2161–69. http://dx.doi.org/10.1093/brain/awp171.

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Cunningham, John A., Jan Blomqvist, Anja Koski-Jännes, Joanne Cordingley, and Russell Callaghan. "Characteristics of Former Heavy Drinkers: Results from a Natural History of Drinking General Population Survey." Contemporary Drug Problems 31, no. 2 (June 2004): 357–69. http://dx.doi.org/10.1177/009145090403100208.

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Cunningham, John A., Jan Blomqvist, Anja Koski-Jännes, and Joanne Cordingley. "Current heavy drinkers' reasons for considering change: Results from a natural history general population survey." Addictive Behaviors 30, no. 3 (March 2005): 581–84. http://dx.doi.org/10.1016/j.addbeh.2004.05.028.

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Gill, Kanwar R., Lorenzo Camellini, Rita Conigliaro, Romano Sassatelli, Francesco Azzolini, Timothy A. Woodward, Laith H. Jamil, Michael B. Wallace, and Massimo Raimondo. "The Natural History of Upper Gastrointestinal Subepithelial Tumors (SETs): A Multicenter Endoscopic Ultrasound (EUS) Survey." Gastrointestinal Endoscopy 67, no. 5 (April 2008): AB206. http://dx.doi.org/10.1016/j.gie.2008.03.537.

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Barbee, Lindley A., Olusegun O. Soge, Christine M. Khosropour, Micaela Haglund, Winnie Yeung, James Hughes, and Matthew R. Golden. "The Duration of Pharyngeal Gonorrhea: A Natural History Study." Clinical Infectious Diseases 73, no. 4 (January 29, 2021): 575–82. http://dx.doi.org/10.1093/cid/ciab071.

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Abstract Background Pharyngeal gonorrhea is relatively common. However, the duration of untreated pharyngeal gonorrhea is unknown. Methods From March 2016 to December 2018, we enrolled 140 men who have sex with men in a 48-week cohort study. Participants self-collected pharyngeal specimens and completed a survey weekly. Specimens were tested using a nucleic acid amplification test at the conclusion of the study. We estimated the incidence and duration of infection. We defined incident infections as 2 consecutive positive tests, and clearance as 2 consecutive negative tests; and, after visual inspection of the data, we reclassified up to 2 weeks of missing or negative tests as positive if they occurred between 2 episodes of infections. We used Kaplan-Meier estimates to define duration of infection. Finally, we report on the frequency of single-positive tests and the time between the last negative test and the positive test. Results Nineteen (13.6%) of 140 participants experienced 21 pharyngeal infections (incidence, 31.7/100 person-years; 95% confidence interval, 20.7–48.6/100 person-years). The estimated median duration of pharyngeal gonorrhea was 16.3 weeks (95% confidence interval, 5.1–19.7 weeks). Twenty-two men had 25 single-positive specimens, a median of 7 days (interquartile range, 7–10 days) after their last negative test. Conclusions The median duration of untreated pharyngeal gonorrhea is 16 weeks, more than double previous estimates. This long duration of infection likely contributes to high levels of gonorrhea transmission.

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Shepard, William D. "Beetles (Coleoptera) of Peru: A Survey of Families. Mycetophagidae Leach 1815." Revista Peruana de Biología 27, no. 2 (May 23, 2020): 121–26. http://dx.doi.org/10.15381/rpb.v27i2.17872.

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The diversity of the family Mycetophagidae (Coleoptera) is summarized for Peru. Two genera are recorded (Litargus Erichson and Thrimolus Casey). Comments are given on classification and distribution of the family, as well as known biology and natural history.

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Fakundiny, Robert. "The New York State Museum: Child of the Geological Survey that Grew to be its Guardian." Earth Sciences History 6, no. 1 (January 1, 1987): 125–33. http://dx.doi.org/10.17704/eshi.6.1.9w66h2g183510672.

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The New York State Museum was created by State legislation in 1870 out of the old State Cabinet, which held the specimens collected by the State Geological and Natural History Survey, James Hall, then State Geologist and Palaeontologist within the Survey, was named Director of the Museum. Hall's need to possess and study vast quantities of paleontological specimens required space for collections storage and processing. His collections became the major supply of specimens for the Cabinet and eventually the Museum. After the original Survey was disbanded, in the early 1840's, Hall's presence gave the Cabinet a definite geological character. As the chief geological scientist, Hall considered the geological research of the Cabinet and later the Museum as a product of the "Geological Survey of New York," even though no formal designation of such a unit was ever proclaimed by state legislation. After all, other states were forming geological research units similar to Hall's and calling them geological surveys. It made sense for good communications for Hall and his predecessor State Geologists to refer to their staff as the New York State Geological Survey. Eventually, through a series of other legislative acts, most importantly in 1904 and 1945, the Museum was made the formal administrative home for the Geological Survey and, thus, its guardian. Museum Directors, therefore, have had the principle role in determining the fate of geological and paleontological research within the Geological Survey, After 1926, when the first non-geologist became director, the Museum's research scope grew faster in other natural and social history areas, such as botany, entomology, zoology, archaeology, ethnology, and history. This expansion is exemplified by the addition of a State Historian to the Education Department in 1895. During its 150-year history the Geological Survey has moved six times, and it is now housed in the Cultural Education Center in the Governor Nelson A. Rockefeller Empire State Plaza, Albany, New York.

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McDonough, Kelly S. "Indigenous Technologies in the 1577 Relaciones geográficas of New Spain: Collective Land Memory, Natural Resources, and Herbal Medicine." Ethnohistory 66, no. 3 (July 1, 2019): 465–87. http://dx.doi.org/10.1215/00141801-7517886.

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Abstract This essay applies the analytic category of technologies proposed by historian Marcy Norton as complex systems of knowledges, practices, and products generated in specific social contexts to a study of the sixteenth-century bureaucratic surveys known as the Relaciones geográficas (RG) manuscripts. As a methodological intervention, the principal aim is to draw out the relatively understudied Indigenous knowledges and practices found throughout the corpus. The first section of the essay outlines the conceptual framework of technologies and contextualizes the RG survey and response processes. The remainder of the essay discusses Indigenous technologies including collective land memory, natural resources, and herbal medicines recorded in the Archdiocese of Mexico corpus of RGs (appendix), thirty-one manuscripts in total.

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de Ázara, Ludson Neves, Leopoldo Bernardi, and Rodrigo Lopes Ferreira. "The first survey on harvestmen in Brazilian artificial cavities, with notes on distribution and natural history." Subterranean Biology 17 (February 17, 2016): 31–53. http://dx.doi.org/10.3897/subtbiol.17.6762.

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Adam, Jacqueline, Rachel Malone, Sioned Lloyd, Jennifer Lee, Christian J. Hendriksz, and Uma Ramaswami. "Disease progression of alpha-mannosidosis and impact on patients and carers – A UK natural history survey." Molecular Genetics and Metabolism Reports 20 (September 2019): 100480. http://dx.doi.org/10.1016/j.ymgmr.2019.100480.

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Vincenzi, Bruno, Anna Maria Frezza, Gaia Schiavon, Daniele Santini, Palma Dileo, Marianna Silletta, Delia Delisi, et al. "Bone metastases in soft tissue sarcoma: a survey of natural history, prognostic value and treatment options." Clinical Sarcoma Research 3, no. 1 (2013): 6. http://dx.doi.org/10.1186/2045-3329-3-6.

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Herd, Natalie, and Ron Borland. "The natural history of quitting smoking: findings from the International Tobacco Control (ITC) Four Country Survey." Addiction 104, no. 12 (December 2009): 2075–87. http://dx.doi.org/10.1111/j.1360-0443.2009.02731.x.

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Maurer, M., T. Caballero, W. Aberer, A. Zanichelli, L. Bouillet, A. Bygum, A. Grumach, C. Pommie, I. Andresen, and H. Longhurst. "P164 Longitudinal natural history of patients with type I/II hereditary angioedema: icatibant outcome survey data." Annals of Allergy, Asthma & Immunology 119, no. 5 (November 2017): S42—S43. http://dx.doi.org/10.1016/j.anai.2017.08.151.

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McGovern, M. M., M. P. Wasserstein, R. Giugliani, B. Bembi, M. T. Vanier, E. Mengel, S. E. Brodie, et al. "A Prospective, Cross-sectional Survey Study of the Natural History of Niemann-Pick Disease Type B." PEDIATRICS 122, no. 2 (July 14, 2008): e341-e349. http://dx.doi.org/10.1542/peds.2007-3016.

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Zichello, Julia, Preeti Gupta, Monique Scott, Bella Desai, Ruth Cohen, Lauri Halderman, Susan Perkins, et al. "A natural history museum visitor survey of perception, attitude and knowledge (PAK) of microbes and antibiotics." PLOS ONE 16, no. 9 (September 22, 2021): e0257085. http://dx.doi.org/10.1371/journal.pone.0257085.

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A kiosk-based survey at the American Museum of Natural History in New York City in 2016–2018 allowed us to assess public knowledge of antibiotics and public attitudes toward microbes in museum goers. Over 22,000 visitors from 172 countries and territories answered several carefully designed questions about microbes and antibiotics. These visitors also entered age, gender, and country demographic data that allowed for stratification along these demographic and geographic divisions. Because museum goers are likely to be better informed about these and other science-based topics, the results described here can set a potential upper bound for public knowledge on these topics. Surprisingly, the results of our analysis of museum goers’ answers about microbes and antibiotics indicate a substantial lack of familiarity with both topics. For example, overall only about 50% of respondents can correctly identify penicillin as an antibiotic and less than 50% of museum visitors view microbes as beneficial. The results described here suggest that we are perhaps off target with our educational efforts in this area and that a major shift in approach toward more basic microbial topics is warranted in our educational efforts.

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Gagnon, Hervé. "The Natural History Society of Montreal's Museum and the Socio-Economic Significance of Museums in 19th-Century Canada." Scientia Canadensis 18, no. 2 (June 18, 2009): 103–35. http://dx.doi.org/10.7202/800382ar.

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ABSTRACT The Natural History Society of Montreal's Museum, the first science museum in Montreal, was led, throughout the first half of the 19th century, by members of the local anglophone bourgeoisie. It temporarily prospered with the increased involvement of the Geological Survey of Canada with the Society during the 1850s and 1860s, until the economic crisis of the 1870s and the departure of the Survey for Ottawa in 1881 restored it to its amateur status.

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Journal articles on the topic 'Natural History Survey'

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