Rare Diseases in the Age of Health 2.0 (Record no. 93261)
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| 000 -LEADER | |
|---|---|
| fixed length control field | 04834nam a22005175i 4500 |
| 001 - CONTROL NUMBER | |
| control field | 978-3-642-38643-5 |
| 003 - CONTROL NUMBER IDENTIFIER | |
| control field | DE-He213 |
| 005 - DATE AND TIME OF LATEST TRANSACTION | |
| control field | 20140220082518.0 |
| 007 - PHYSICAL DESCRIPTION FIXED FIELD--GENERAL INFORMATION | |
| fixed length control field | cr nn 008mamaa |
| 008 - FIXED-LENGTH DATA ELEMENTS--GENERAL INFORMATION | |
| fixed length control field | 131021s2014 gw | s |||| 0|eng d |
| 020 ## - INTERNATIONAL STANDARD BOOK NUMBER | |
| International Standard Book Number | 9783642386435 |
| -- | 978-3-642-38643-5 |
| 024 7# - OTHER STANDARD IDENTIFIER | |
| Standard number or code | 10.1007/978-3-642-38643-5 |
| Source of number or code | doi |
| 050 #4 - LIBRARY OF CONGRESS CALL NUMBER | |
| Classification number | R856-857 |
| 072 #7 - SUBJECT CATEGORY CODE | |
| Subject category code | MQW |
| Source | bicssc |
| 072 #7 - SUBJECT CATEGORY CODE | |
| Subject category code | TEC009000 |
| Source | bisacsh |
| 082 04 - DEWEY DECIMAL CLASSIFICATION NUMBER | |
| Classification number | 610.28 |
| Edition number | 23 |
| 100 1# - MAIN ENTRY--PERSONAL NAME | |
| Personal name | Bali, Rajeev K. |
| Relator term | editor. |
| 245 10 - TITLE STATEMENT | |
| Title | Rare Diseases in the Age of Health 2.0 |
| Medium | [electronic resource] / |
| Statement of responsibility, etc | edited by Rajeev K. Bali, Lodewijk Bos, Michael Christopher Gibbons, Simon Ibell. |
| 264 #1 - | |
| -- | Berlin, Heidelberg : |
| -- | Springer Berlin Heidelberg : |
| -- | Imprint: Springer, |
| -- | 2014. |
| 300 ## - PHYSICAL DESCRIPTION | |
| Extent | XXXIII, 292 p. 14 illus. |
| Other physical details | online resource. |
| 336 ## - | |
| -- | text |
| -- | txt |
| -- | rdacontent |
| 337 ## - | |
| -- | computer |
| -- | c |
| -- | rdamedia |
| 338 ## - | |
| -- | online resource |
| -- | cr |
| -- | rdacarrier |
| 347 ## - | |
| -- | text file |
| -- | |
| -- | rda |
| 490 1# - SERIES STATEMENT | |
| Series statement | Communications in Medical and Care Compunetics, |
| International Standard Serial Number | 2191-3811 ; |
| Volume number/sequential designation | 4 |
| 505 0# - FORMATTED CONTENTS NOTE | |
| Formatted contents note | Part I: Rare and Orphan Diseases -- Why R&D into Rare Diseases Matter -- Vignette: Autoimmune Polyendocrine Syndrome Type I (APS 1) -- Rare Diseases: How Genomics has Transformed Thinking, Diagnoses and Hope for Affected Families -- Vignette: A Giant of a Man: Simon Ibell (MPS II) -- Innovative Funding Models for Rare Diseases -- Rare Diseases: The Medical and the Disability Perspectives in the Age of 2.0 -- Vignette: Taking Control of Thalassemia -- Industry Perspectives on Orphan Drug Development -- Part II: Health 2.0 -- Health 2.0: The Power of the Internet to Raise Awareness of Rare Diseases -- Vignette: Living with NOMID: Michael’s Story -- Health 2.0 and Information Literacy for Rare and Orphan Diseases -- Social Media and Engaging with Health Providers -- Vignette: Hope–Overcoming Fabry -- Empowering the Rare Disease Community: Thirty Years of Progress -- Part III: Patient Perspectives and Empowerment Issues -- The Role of Social Media in Healthcare: Experiences of a Crohn’s Disease Patient -- Vignette: The Blessings and Curse of Diagnosis: Myasthenia Gravis -- Noah’s Hope: Family Experiences of Batten Disease -- Using Technology to Share Information: Experiences of Oesophagus Atresia (OA) and Tracheaoesophageal Fistel (TOF) -- Vignette: MPSIIIA (Sanfilippo) -- The Empowered Patient in the Health System of the Future -- Vignette: The Journey of a Lifetime -- Personalized Medicine: A Cautionary Tale or Instructional Epic -- Part IV: Closing Gaps: Promising Research and Future Considerations -- Managing Communication for People with Amyotrophic Lateral Sclerosis: The Role of the Brain-Computer Interface -- Vignette: The Wilderness -- Opportunities and Challenges for Supporting People with Vascular Dementia Through the Use of Common Web 2.0 Services -- Vignette: Recessive Dystrophic Epidermolysis Bullosa (RDEB): Sibling Experiences -- Health Policies for Orphan Diseases: International Comparison of Regulatory, Reimbursement and Health Services Policies -- Vignette: Route 125 (October 2009) -- Rare Diseases Challenges and Opportunities -- Epilogue. |
| 520 ## - SUMMARY, ETC. | |
| Summary, etc | This text focuses on various factors associated with orphan diseases and the influence and role of health information technologies. Orphan diseases have not been adopted by the pharmaceutical industry because they provide little financial incentive to treat or prevent it. It is estimated that 6,000-7,000 orphan diseases exist today; as medical knowledge continues to expand, this number is likely to become much greater. The book highlights the opportunities and challenges in this increasingly important area. The book explores new avenues which are opened by information technologies and Health 2.0, and highlights also economic opportunities of orphan disease medicine. The editors of this new book have international experience and competencies in the key areas of patient empowerment, healthcare and clinical knowledge management, healthcare inequalities and disparities, rare diseases and patient advocacy. |
| 650 #0 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Engineering. |
| 650 #0 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Medical records |
| General subdivision | Data processing. |
| 650 #0 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Biomedical engineering. |
| 650 14 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Engineering. |
| 650 24 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Biomedical Engineering. |
| 650 24 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Health Informatics. |
| 650 24 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Health Informatics. |
| 650 24 - SUBJECT ADDED ENTRY--TOPICAL TERM | |
| Topical term or geographic name as entry element | Health Economics. |
| 700 1# - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Bos, Lodewijk. |
| Relator term | editor. |
| 700 1# - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Gibbons, Michael Christopher. |
| Relator term | editor. |
| 700 1# - ADDED ENTRY--PERSONAL NAME | |
| Personal name | Ibell, Simon. |
| Relator term | editor. |
| 710 2# - ADDED ENTRY--CORPORATE NAME | |
| Corporate name or jurisdiction name as entry element | SpringerLink (Online service) |
| 773 0# - HOST ITEM ENTRY | |
| Title | Springer eBooks |
| 776 08 - ADDITIONAL PHYSICAL FORM ENTRY | |
| Display text | Printed edition: |
| International Standard Book Number | 9783642386428 |
| 830 #0 - SERIES ADDED ENTRY--UNIFORM TITLE | |
| Uniform title | Communications in Medical and Care Compunetics, |
| -- | 2191-3811 ; |
| Volume number/sequential designation | 4 |
| 856 40 - ELECTRONIC LOCATION AND ACCESS | |
| Uniform Resource Identifier | http://dx.doi.org/10.1007/978-3-642-38643-5 |
| 912 ## - | |
| -- | ZDB-2-ENG |
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