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240217s2024 enk o 001 0 eng d |
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|a 9780323999359
|q (electronic bk.)
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|a 0323999352
|q (electronic bk.)
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|z 9780323999342
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|z 0323999344
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|a (OCoLC)1422141654
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|a RC871
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|a 616.6
|2 23/eng/20240227
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|a TXAM
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| 245 |
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|a Rare and complex urology /
|c edited by Wouter F.J. Feitz, Jen Tidman.
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| 260 |
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|a London :
|b Academic Press,
|c 2024.
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| 300 |
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|a 1 online resource
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| 336 |
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|a text
|b txt
|2 rdacontent
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| 337 |
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|a computer
|b c
|2 rdamedia
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| 338 |
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|a online resource
|b cr
|2 rdacarrier
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| 500 |
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|a Includes index.
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| 505 |
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|a Intro -- Rare and Complex Urology -- Copyright -- Contents -- Contributors -- Acknowledgements -- Part I: Introductory chapters -- Chapter 1: Introduction: Rare urology, ERN eUROGEN and knowledge exchange -- Chapter 2: The European Association of Urology (EAU) and ERN eUROGEN -- Part II: Overview chapters -- Chapter 3: ERN eUROGEN: Impact and innovations for rare and complex urology -- Introduction -- Rare or low-prevalence complex diseases in Europe -- European reference networks -- ERN eUROGEN: The European reference network for rare urogenital diseases and complex conditions -- ERN eUROGEN and rare urogenital diseases and complex conditions -- Target groups -- Patients -- Members -- Workstreams -- Expertise areas -- Work packages -- Coordination -- Objectives -- Management and operational activities -- HCP network coordinator -- Coordination team -- Strategic board -- Operational board -- Advisory board -- Leads and coordinators -- Dissemination -- Objectives -- Dissemination plan -- Meetings and collaboration -- Websites -- Newsletters, emails and social media -- Publications and presentations -- Promotional materials -- Guidelines and training and education -- Evaluation -- Objectives -- Continuous monitoring -- First 5-year evaluation -- Healthcare and CPMS -- Objectives -- The clinical patient management system: A new eHealth technology -- ERN eUROGEN and CPMS -- Case referrals -- The future of CPMS -- Registries, data management and analysis -- Objectives -- Training and education -- Objective -- Webinar programme -- Training courses -- Patient and clinician information -- Exchange programme -- Clinical practice guidelines and clinical decision support tools -- Objectives -- Conclusion -- References -- Chapter 4: The patient view on the ERN programme: Share, care, cure, and pathways.
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| 505 |
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|a European Reference Networks: Advancing care and treatments for those born with rare and complex diseases -- Establishing best practice-Caring and collaboration -- The role of European Patient Advocacy Groups -- Centralisation of care in rare diseases and complex conditions [6] -- Adapting to a different life -- Rare diseases and complex conditions-A lifelong challenge -- Puberty -- Promoting Independence -- Facing the challenges of rare diseases and complex conditions -- The example of living with anorectal malformation -- Clinicians and therapeutic staff -- Holistic care -- A collaborative approach -- Rare diseases and complex conditions-A late diagnosis: The real story of the psychological impact of KS/XXY -- Promoting excellent communication -- References -- Chapter 5: Cross-ERN actions and collaborations by ERN eUROGEN -- Introduction and background -- Unique needs of rare diseases -- Need for centralisation and collaboration globally -- ERN maturing capacities and experience -- Policy context -- European policy -- Global policy -- Cross-ERN collaboration -- Cross-ERN working groups -- European rare disease research coordination and support action (ERICA) -- Collaboration with individual ERNs -- ERN ERNICA -- ERN ERKNet -- Endo-ERN -- ERN GENTURIS -- ERN ITHACA -- ERN TransplantChild -- European collaboration -- Supporting partners: Organisations and individual experts -- European Association of Urology (EAU) -- Anorectal malformations network (ARM-Net) consortium -- European Paediatric Surgeons Association (EUPSA) -- European Society for Paediatric Urology (ESPU) -- International Society for the Study of Bladder Pain Syndrome (ESSIC) -- Individual experts -- Rare 2030 -- European Joint Programme on Rare Diseases (EJP RD) -- Other -- Global collaboration -- Global network for rare diseases (GNRD) -- CureforU.
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| 505 |
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|a Murdoch Childrens Research Institute in Melbourne, Australia -- Confederación Americana de Urología (CAU) -- Ukraine -- Opportunities -- Expansion of collaboration in the WHO European region/outside the EU -- Taking part in the pilot global network for rare diseases (GNRD) -- References -- Chapter 6: Development of the ERN eUROGEN registry -- Introduction -- Objectives -- Data elements and data collection -- Registry setup -- Centralised registry -- Participating HCPs -- Informed consent -- Prospective and retrospective inclusion -- Data `ownership -- Roles -- Access to the ERN eUROGEN registry -- Finances -- Data analyses -- Quality aspects -- Information quality -- Data quality evaluation -- Quality audit visits -- Example of the potential use of the registry -- References -- Chapter 7: Development of ERN eUROGEN clinical practice guidelines (CPGs) and clinical decision support tools (CDSTs) -- Introduction and background -- Clinical practice guidelines and clinical support decision tools: Definitions and disclaimers -- ERN eUROGEN and guidelines -- ERN guidelines consortium -- Background and formation -- Training on guidelines -- How the consortium and ERN eUROGEN work together -- ERN Eurogen Guidelines Expert Panel -- ERN Eurogen Guidelines work and collaborations -- Bladder exstrophy/epispadias (EA 1.2) -- Clinical practice guideline on bladder exstrophy -- Rare urological stone and kidney diseases (EA 1.3) -- Collaboration and consensus papers -- Clinical practice guideline on congenital solitary functioning kidney -- Nonsyndromic urogenital tract malformations (EA 1.4) -- Clinical practice guideline on Paediatric neurogenic bladder -- Clinical decision support tool or consensus paper on vaginal malformation -- Clinical decision support tool on megaureters -- Posterior urethral valves (EA 1.5).
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| 505 |
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|a Clinical decision support tool on posterior urethral valves -- Urorectal/anorectal malformations (EA 1.7) -- Collaboration and consensus papers -- Clinical practice guideline on anorectal malformations -- Rare diseases and conditions affecting the female urethra (EA 2.2) -- Clinical practice guideline on vesicovaginal fistula -- Interstitial cystitis (EA 2.5) -- Clinical practice guideline on rare bladder inflammatory conditions -- Penile cancer (EA 3.1) -- Clinical practice guideline on penile cancer -- Clinical decision support tool on consensus-driven recommendations for the implementation of centralisation in penile cancer -- Adrenal tumours (EA 3.3) -- Clinical practice guideline on adrenal tumours -- Future objectives -- References -- Part III: Clinical chapters -- Section A: Workstream 1: Rare congenital uro-recto-genital anomalies -- Chapter 8: Expertise Area 1.1: Complex genital reconstructions in patients with differences of sex development -- Overview/DSD classification -- Diagnostics -- Recommended age at surgery and legislation -- Surgical concepts of complex genital reconstruction -- Feminising genitoplasties -- Vaginoplasty -- Clitoroplasty -- Masculinising genitoplasties -- Straightening of the penis -- Urethral reconstruction -- Penoscrotal transposition -- Complications and long-term follow-up -- Aspects of gonadal surgery -- Surgical management of gonadal dysgenesis -- References -- Chapter 9: Expertise Area 1.2: Bladder exstrophy/epispadias -- Epidemiology -- Types and variants -- Surgical management: Two current surgical strategies -- German strategy and experience, the staged approach -- The Nantes one-stage combined delayed bladder closure with Kelly radical soft-tissue mobilisation (RSTM) -- Long-term results after bladder exstrophy repair -- Health-related quality of life (HRQOL) -- Renal function -- Incontinence.
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| 505 |
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|a Sexual function and reproduction in females -- Sexual function and reproduction in men -- Malignancy risk -- Orthopaedics -- Transition -- References -- Chapter 10: Expertise Area 1.3: Rare urological stones and kidney diseases -- Introduction -- Epidemiology -- Composition -- Tests -- Metabolic evaluation -- Imaging -- Aetiologies -- Infectious calculi -- Calculi secondary to lifestyle -- Calcium calculi and hypercalciuria -- Hypercalcaemia associated with hypercalciuria -- Primary hyperparathyroidism -- CaSR inhibitory mutation (benign hypocalciuric familial hypercalcaemia (OMIM 145980) -- Hypercalcaemia with low PTH (OMIM 143880) -- Isolated hypercalciuria -- Absorptive hypercalciuria -- Hypercalciuria of renal origin -- Cystinuria -- Distal tubular acidosis -- Different types of distal tubular acidosis -- Autosomal recessive forms (OMIM 267300) -- Autosomal dominant forms -- Hyperoxaluria -- Primary hyperoxaluria -- Primary hyperoxaluria type 1 (OMIM 259900) -- Other primary hyperoxaluria -- Secondary hyperoxaluria -- Uric acid calculi -- Management -- Medical care -- Infectious calculi -- Hypercalciuria -- Cystinuria -- Distal tubular acidosis -- Hyperoxaluria -- Uric acid calculi -- Urological management [9] -- Shock wave lithotripsy (SWL) -- Ureteroscopy -- Percutaneous nephrolithotomy (PCNL) -- Surgery -- Follow-up -- Specific conditions -- Conclusion -- References -- Chapter 11: Expertise Area 1.4: Nonsyndromic urogenital tract malformation (neurogenic bladder and spina bifida) -- Introduction -- Background -- Classification -- Neurological pathologies affecting the LUT -- Spinal dysraphism -- Tethered cord -- Sacral agenesis and anorectal malformations -- Other neurological lesions (Table 3) -- Severe voiding dysfunction or nonneurogenic neurogenic bladder -- Diagnostic evaluation -- Physical and neurological exam.
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| 520 |
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|a This book, 'Rare and Complex Urology,' is a comprehensive resource focused on the management and treatment of rare and complex urological conditions. Edited by Wouter F.J. Feitz and Jen Tidman, it is a collaborative work involving contributions from various experts in the field. The book covers topics such as rare urogenital diseases, complex conditions, and the European Reference Networks (ERN) eUROGEN's role in advancing care for these conditions. It emphasizes the importance of knowledge exchange, innovation, and collaboration among healthcare professionals to improve patient outcomes. The book is intended for medical practitioners, researchers, and healthcare professionals specializing in urology and related fields, providing insights into the latest research, clinical practices, and guidelines for dealing with rare urological diseases.
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| 650 |
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0 |
|a Urology.
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| 650 |
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0 |
|a Genitourinary organs
|x Diseases.
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| 650 |
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2 |
|a Urology
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| 650 |
|
6 |
|a Urologie.
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| 650 |
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6 |
|a Appareil urogénital
|x Maladies.
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| 655 |
|
7 |
|a Electronic books.
|2 local
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| 700 |
1 |
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|a Feitz, Wouter F. J.
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| 700 |
1 |
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|a Tidman, Jen.
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| 710 |
2 |
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|a ScienceDirect (Online service)
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| 776 |
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|c Original
|z 0323999344
|z 9780323999342
|w (OCoLC)1389608446
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| 856 |
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|u http://proxy.library.tamu.edu/login?url=https://www.sciencedirect.com/science/book/9780323999342
|z Connect to the full text of this electronic book
|t 0
|
| 955 |
|
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|a Elsevier ScienceDirect 2026-2027
|
| 994 |
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|a 92
|b TXA
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|a Texas A&M University
|b College Station
|c Electronic Resources
|s www_evans
|d Available Online
|t 0
|e RC871
|h Library of Congress classification
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| 998 |
f |
f |
|a RC871
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|l Available Online
|