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Health Care for People with Intellectual and Developmental Disabilities Across the Lifespan

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Table of Contents

Foreword; David Satcher.- Tribute to Allan Crocker; I. Leslie Rubin.- Introduction to the volume; I. Leslie Rubin.- Part I. Systems of Delivery Health Care.- Chapter 1. Introduction to Intellectual and Developmental Disabilities; Dilip R. Patel, Donald Greydanus, Joav Merrick and I. Leslie Rubin.- Chapter 2. Health is More Than Medicine; Donald J. Lollar and Randall A. Phelps.- Chapter 3. Health of Health Care for People with Intellectual and Developmental Disability; Wendy M. Nehring and Brandi Lindsey.- Chapter 4. Family Centered Care.- 4.1. Family Centered Care in a Health Care Setting; Catherine de Haas and Ruth Ryan.- 4.2. Siblings of Children and Adults with Intellectual and Developmental Disability; Monica McCaffrey.- 4.3. Grandparents as Caregivers for Grandchildren with Intellectual and Developmental Disabilities; LaShawnDa Pittman, Janice Nodvin and Maeve Howett.- 4.4. Aging Parents; Nancy S. Jokinen.- 4.5. Rights of Individuals with Disability to Parenthood; Karen McKenzie, Laura Shewan and Suzanne Wilson.- 4.6. Foster Care; Julie Dini.- 4.7. Transitioning Youth to Adult Health Care: A Person-Centered and Culturally Competent Approach; Stacey Ramirez, Staeshe Collins and Brenda Liz Munoz.- Chapter 5. Integrating Systems of Care for Individuals with Intellectual and Developmental Disabilities across the Lifespan; Georgina Peacock and Cheryl Rhodes.- Chapter 6. International Classification of Function; Margaret Kyrkou.- Chapter 7. Systems of Health Care Delivery.- 7.1. Clinical Settings for Health Care Delivery; Stephen B. Sulkes.- 7.2. Reaching the Unserved and Underserved: Medical Care in Rural and Urban Settings; Daniel Crimmins and Akilah Heggs.- 7.3. International Perspectives on the Delivery of Health Care; David OHara.- 7.4. Health Care Financing; David Ervin.- 7.5. Systems of Health Care Delivery: Community Setting; Rosemary M. Caron.- 7.6. Models for Care for Children with Medical Complexity; Melinda Morin, Justin Alvey, Nancy Murphy and Laurie Glader.- 7.7. School Settings; Jeffrey Okamoto.- 7.8. Health Care Transition; David Wood, Linda R. Edwards and Brian Hennen.- 7.9. Community Healthcare; David A. Ervin and Brian Hennen.- 7.10. Nursing Home Settings; Nursing Home Settings; Sandra Friedman.- 7.11. Current and Emerging Trends for Residential Supports for Persons with Intellectual and Developmental Disabilities and the Impact of Managed Care Initiatives; James Conroy, Steven J. Dale and Robert McCaffrey.- 7.12. Large Residential Facilities; Norberto Alvarez.- 7.13. Community Nursing; Joan Earle Hahn and Laura E. Fox. 7.14. Medical Home; Liz Grier.- Chapter 8. Principles of Care and Ethics; Peter J. Smith.- Chapter 9. Practicalities of Care. 9.1. Practicalities of Care for Adults with Intellectual and Developmental Disabilities; Peter Lindsay and Matt Hoghton.' 9.2. Electronic Medical Records; Stephen B. Sulkes.- Chapter 10. Intellectual Disability and the Environment.- 10.1. The Environment; J. Carolyn Graff and Jeffrey A. Foran.- 10.2. Fetal Environment and Risks for Intellectual and Developmental Disabilities; I. Leslie Rubin.- Chapter 11. Built Environments for Improving Human Development and Promoting Health and Quality of Life; Chris Kochtitzsky and Michele Crachiola.- Chapter 12. Public Health Perspectives on Intellectual and Developmental Disabilities; Gloria L. Krahn and Michael H. Fox.- Chapter 13. International Perspectives.- 13.11. Systems of Delivery of Health Care for Persons with Developmental Disabilities: The Case of Belgium; Koen Hermans and Anja Declerq.- 13.2. Service for People with Intellectual Disability in the United Kingdom; Hardeep Uppal and Vee P. Prasher.- 13.3. People with Developmental Disabilities in the United States of America; Gloria L. Krahn and Lynda B. Bersani.- Chapter 13.4. Former Soviet Union; Naira Avetisyan.- 13.5. Health and Social Services for People with Intellectual and Developmental Disabilities in Taiwan; Kuo yu Wang.- 13.6. Intellectual Disability in India: Recent Trends in Care and Services; Satish C. Girimaji and John VS Kommu.- 13.7. Hong Kong, PRC; Ben MF Law and Daniel TL Shek.- 13.8. Israel; Joav Merrick and Mohammed Morad.- 13.9. Canada; Ian Casson, Theresa Broda, Jessica Jones, Alvin Loh, Bruce McCreary, Ullanda Niel and C. Ruth Wilson.- 13.10. Organization of Services and Life-Long Health Care: Japan; Shigeru Suemitsu and Susumu Uehara.- 13.11. Special-Needs Education, Special Care, and Education for Physicians in Finland; Markus Kaski.- 13.12. South America. A Service Example from Lima, Peru; Liliana Mayo and Judith M. LeBlanc.- 13.13. Status of Legislation and Services in Turkey across the Lifespan; Kerim M. Munir.- 13.14. Service Organization and Support for People with Intellectual and Developmental Disabilities in the Netherlands; Frans VPM Ewals and Sylvia A Huisman.- 13.15. International Perspectives: Chile; Rosario Moore, Patricia M Valenzuela, Maria A Paul and Macarena Lizama.- 13.16. Services for Persons with Intellectual and DEvelopmental Disabilities in Italy; Fabrizio Fea.- 13.17. Denmark. A Historic Journey; Joav Merrick, Peter Uldall and Jakob Volther.- 13.18. Service and Care in Australia; Robert W. Davis.- 13.19. Africa; I Leslie Rubin.- Part II. Clinical Care.- Chapter 14. Developmental and Functional Evaluation and Assessment; Dilip R. Patel and Cora M. Taylor.- Chapter 15. Communication with Patients, Parents and Other Caregivers; Sheridan Forster.- Chapter 16. Inborn Errors of Metabolism.- 16.1. Newborn Screening; Geoffrey R. DeTolve.- 16.2. The Mucopolysaccharoidoses; Robert Conway.- 16.3. The Sphingolipidoses; Robert Conway.- 16.4. Mitochondrial Disorders; Frances D. Kendall.- Chapter 17. Genetics and Genetic Syndromes.' 17.1. What is New in Genetics and Genomics?; Helga V. Toriello.- 17.2. Autism and Genetics; Helga V. Toriello.- 17.3. 22q11.2 Deletion Syndrome: A Paradigmatic Copy-Number-Variant (CNV) Disorder; Joseph F. Cubells.- 17.4. Genetic Counseling; Sarah L. Klemm and Jennifer Fulbright.- Chapter 18. Syndromes.- 18.1. Down Syndrome; Brian G. Skotko and Ariel Tenenbaum.- 18.2. Fragile X. Syndrome; Emma Hare, Reymundo Lozano, Lindsey Partington and Randi J. Hagerman.- 18.3. Rett Syndrome: Seeing the Way Forward; Alan K. Percy.- 18.4. Prader Willi Syndrome; Randell Alexander.- 18.5. Williams Syndrome; Elaine Pereira, Robert Marion and Barbara R. Pober.- 18.6. Angelman Syndrome; Donald E. Greydanus, Helen D. Pratt and Marlene Pryson.- 18.7. Smith-Magenis Syndrome; Donald E. Greydanus and Joav Merrick.- 18.8. Noonan Syndrome; Jacqueline A. Noonan.- 18.9. Phakomatoses; Bruce Korf.- 18.10. Spina Bifida; Robert A. Jacobs, Alexis Deavonport, Kathryn Smith and Alex Van Speybroeck.- 18.11. Fetal Alcohol Syndrome; Ariel Tenenbaum, Isaiah Wexler and Joav Merrick.- 18.12. Other Syndromes.- 18.12.1. Lowe Syndrome; Donald E. Greydanus, Helen D. Pratt and Marlene Pryson.- 18.12.2. Nager Syndrome; Donald E. Greydanus, Helen D. Pratt and Marlene Pryson.- 18.12.3. Sturge-Weber Syndrome; Donald E. Greydanus, Helen D. Pratt and Marlene Pryson.- 18.12.4. Klinefelter Syndrome; Vandana Raman.- 18.12.5. Cornelia de Lange Syndrome; Elizabeth Poplawski.- Chapter 19. Prematurity and Ist Consequences; I. Leslie Rubin.- Chapter 20. Cerebral Palsy; Sarah Winter.- Chapter 21. Neurological Disorder.- 21.1. Congenital Anomalies of the Brain; Ayelet Halevy, Osnot Konen and Aviva Mimouni-Bloch.- 21.2. Epilepsy; Norberto Alvarez.- 21.3. Sleep disorders; Norberto Alvarez.- 21.4. Movement Disorders; Paula D. Ravin.- 21.5. Dementia and Alzheimer's Disease; Norberto Alvarez.- 21.6. Peripheral Nerve Disorders; Norberto Alvarez.- Chapter 22. Physiatry and Function.- 22.1. Pediatric Aspects of Physiatry and Function; Joshua Vova and Maurice G. Sholas.- 22.2. Psychiatry and Function: Common Issues in Adults with Intellectual and Developmental Disabilities; Dale C. Strasser, Laura Jones and Mitchel Leavitt.- Chapter 23. Developmental Therapies and Functional Assistance.- 23.1. Allied Health Professionals; Meir Lotan.- 23.2. Occupational Therapy; Sharon A. Cermak and Ann E. Borreson.- 23.3. Physical Therapy; Priscilla S. Osborne and Meir Lotan.- 23.4. Speech Language Pathology: Supports to Communication; John M. Costello and Howard C. Shane.- Chapter 24. Health Promotion; James H. Rimmer and Kelly Hsieh.- Chapter 25. Orthopaedic Considerations; Karen M. Bovid and Dilip R. Patel.- Chapter 26. Dermatology; Brian P. Pollack, Leslie P. Lawley, Jenna Streicher, Jason Hadley and Jack L. Arbiser.- Chapter 27. Eye and Vision Care; Laura Gwatkin.- Chapter 28. Dentistry; Ilan Feldberg and Joav Merrick.- Chapter 29. Otolaryngology.- 29.1 Hearing Impairment; Peter Chung, Shibani Kanungo and Dilip R. Patel.- 29.2 Otolaryngology; Michael McWay and Colleen Dodich.- Chapter 30. Gastrointestinal Issues; Orhan Atay.- Chapter 31. Nutrition; Dawna Torres Mughal and Patricia Novak.- Chapter 32. Feeding Aspects; Laura Minando and Elana M Bern.- Chapter 33. Endocrine Issues; Rachel-Marie A. Cazeau and Manmohan K. Kamboj.- Chapter 34. Urological Concerns; Julian Wan.- Chapter 35. Cardiology.- 35.1 Congenital Heart Disease and Down Syndrome; Kenneth J. Dooley.- 35.2 Congenital Heart Disease; Shiva Sharma.- Chapter 36. Pulmonology, Sleep Disordered Breathing and Sleep Apnea; Charles A. McCaslin and John Norman Schuen.- Chapter 37. Women's Health; Stephanie J. Stockburger and Hatim A. Omar.- Chapter 38. Men's Health; Joav Merrick and Mohammed Morad.- Chapter 39. Sexuality; Sorah Stein and Mitch Tepper.- Chapter 40. Cancer and Oncology; Walid Kaddan and Joav Merrick.- Chapter 41. Severe and Profound Intellectual Disability.- 41.1 Care; Margaret Kyrkou.- 41.2 Psychological Well-Being of Children and Adults with Severe and Profound Intellectual and Developmental Disabilities; Fleur-Michelle M Coiffait and Alexandra T Leedham.- Chapter 42. Geriatrics.- 42.1 Aging: Demographics, Trajectories and Health System Issues; Kruti Acharya, Abigail Schindler and Tamar Heller.- 42.2 Optimizing Health While Aging with Developmental Disabilities; Carl Tyler and Joanne Wilkinson.- 42.3 Dementia: Screening, Evaluation, Diagnosis and Management; Seth M. Keller, Matthew P. Janicki and Lucille Esralew.- 42.4 Assistive Technology and Older Adults; Eliezer Carmeli, Bita Imam and Joav Merrick.- 42.5 Sarcopenia: Facts and Challenges; Eliezer Carmeli and Joav Merrick.- Chapter 43. Mental Health and Behavior.- 43.1 Introduction to Mental Health; Jarrett Barnhill.- 43.2 Psychiatric Assessment; Mike Stawski.- 43.3 Autism Spectrum Disorder; Raun D. Melmed and Joseph F. Cubells.- 43.4 Attention Deficit and Hyperactivity Disorder; Mark L. Wolraich.- 43.5 Mood Disorders, Depression and Bipolar Disorder; Uttam K. Raheja and Teodor Postolache.- 43.6 Anxiety: Challenges of Normal and Abnormal Responses; Alya Reeve.- 43.7 Behavior Approach to Management of Aggression, Self-Injurious Behavior, and Pica; Sorah Stein, Craig Strohmeier, James K. Luiselli and Christopher A. Tullis.- 43.8 Basic Psychopharmacology; Jarrett Barnhill.- 43.9 Integrated Psychopharmacological Management; Jarrett Barnhill.- 43.10 Psychosis; Robin Friedlander.- 43.11 Diagnostic, Treatment,and Service Considerations to Address Challenging Behavior: A model Program for Integrated Service Delivery; Joan B Beasley, Ann Klein and Karen Weigle.- 43.12 Working with Children and Working with Schools; Sorah Stein and Craig Strohmeier.- 43.13 Inpatient Psychiatric Care; Lauren R Charlot.- 43.14 Multidisciplinary assessment; Lauren R Charlot.- 43.15 Integration of Mental and Behavioral Health in Primary Care; Ashley Williams and David A. Ervin.- Chapter 44. Infectious Diseases, Immunizations and Universal Precautions; Rima Khasaweh, Jillian Wallen and H. Dele Davies.- Chapter 45. Intensive Care; Mahesh Sharman and Jeff Clark.- Chapter 46. Adoption; Gary Diamond.- Chapter 47. Emergency Care; Deborah Dreyfus and Kim A. Bullock.- Chapter 48. Primary Health Care.- 48.1 Community-Based Primary Healthcare for Adults; Marc T. Emmerich.- 48.2 An E-toolkit for Primary Health Care of Adults; Thomas Cheetham.- Chapter 49. The Professional Nursing Role in Support of People with Intellectual and Developmental Disabilities; Marisa C. Brown.- Chapter 50. Principles of Pharmacology; Cynthia Feucht, Dilip R. Patel and Karen M. Bovid.- Chapter 51. Podiatry; Angela Evans, Hylton Menz, Jared Bourke, Nikolaos Nikopoulos, Jill Ferrari, Meredith Wilkinson, Stewart Morrison, Joshua Burns, Shannon Munteanu, Valerie Dobie and Tom Walsh.- Chapter 52. Pain; Chantel C Barney, John Belew, Abraham J. Valkenburg, Frank J. Symons and Tim F. Oberlander.- Chapter 53. Anesthesia in Children; Fatis Altintas and Ozlem S. Cakmakkaya.- Chapter 54. End-of-Life Care; Sandra L. Friedman and David T. Helm.- Part IV. Values and Quality of Care.- Chapter 55. Assessing Health and Quality of Care; David A. Ervin and I. Leslie Rubin.- Chapter 56. Social Determinants of Health and Disability; I. Leslie Rubin.- Chapter 57. Concepts of Holistic Care.- Soren Ventegodt, Isack Kandel, David Ervin and Joav Merrick.- Chapter 58. Integrative Medicine; Hilary H. McClafferty and Kathi J. Kemper.- Chapter 59. Guardianship and Independence: Decision-Making Options; Tina Sarkar.- Chapter 60. Inclusion.- 60.1 The Importance of Inclusive Participation in Securing Quality Healthcare Throughout the Lifespan of Persons with Intellectual and Developmental Disabilities: Personal Perspectives; Steven J. Dale and Robert P. McCaffrey.- 60.2 Ideal Requirements for the System of the Future: Self-Determination; Thomas Nerney with Steven J. Dale.- Chapter 61. Abuse and Neglect.- Vincent J. Palusci, Ellen Datner and Christine Wilkins.- Chapter 62. Healthcare Utilization and Costs for Individuals with Disabilities; Neelkamal Soares, Thomas Graf and Dilip R. Patel.- Chapter 63. Trends in Using Technology to Achieve Better Health Outcomes; David O'Hara, Steven E. Stock and Daniel K. Davies.- Chapter 64. Family Quality of Life; Roy Brown, Margaret Kyrkou and Preethy Samuel.- Chapter 65. Education of Health Professionals.- 65.1 Physicians; Matthew Holder.- 65.2 Nursing Education about People with Intellectual Disability: An International Perspective; Joan Earle Hahn.- 65.3 Other Health Professions; Amy Hewitt, Amy Esler, Sheri Stronach, Lindsey Zemanek, Elizabeth Adler, Julie Arndt, Jessica Cassidy, Rande Peyton and Tonya Rich.- 65.4 What Undergraduate and Graduate Students Should Know about Disability; Susan M. Havercamp and Patricia Navas Macho.- 65.5 Continuing Education for Health Care Providers; Susan M. Havercamp and Patricia Navas Macho.- 65.6 Interdisciplinary Training; David T. Helm.- Chapter 66. Barriers to Care; Lynda Lahti Anderson and Sheryl A. Larson.- Chapter 67. Coping with Caregiver Stress; Elizabeth A. Perkins and Amy Hewitt.- Chapter 68. Special Olympics; Stephen Corbin and Matthew Holder.- Part IV. Research Aspects.- Chapter 69. Research Aspects; Joav Merrick.- Chapter 70. Health Research in Intellectual and Developmental Disabilities; Rose E. Nevill, Haleigh M. Scott and Susan M. Havercamp.- Chapter 71. Clinical Trials; Ekaterini Tsilou and Anne Zajicek.- Part V. Disaster Medicine.- Chapter 72. Disaster Planning and Response with and for People with Disabilities; Joni Charme, Georgina Peacock, Stehanie Griese, and Bill Howard.- Part VI. Medicine or Health: Science or Art?.- Chapter 73. A Healthy Dose of Laughter and the Arts: The Role(s) of Play, Laughter and the Arts in Promoting Good Health and Maintaining Quality of Life; Bernie Warren, Candace Hind and Sydney Holmes.- Part VII. UN Convention.- Chapter 74. Health and the UN Convention on the Rights of Persons with Disabilities; Joav Merrick and Mohammed Morad.- Part VIII. Future Aspects.- Chapter 75. A Glimpse into the Future; I. Leslie Rubin, David A. Ervin and Joav Merrick.

About the Author

I. Leslie Rubin, MD, is President and Founder of the Innovative Solutions for Disadvantage and Disability (ISDD), Research Associate Professor at the Department of Pediatrics, Morehouse School of Medicine in Atlanta, Georgia, Co-director of the Southeast Pediatric Environmental Health Unit at Emory University, and Medical Director of Developmental Pediatric Specialists, Atlanta, Georgia. He is originally from South Africa, where he trained in pediatrics. He came to the United States to specialize in neonatology and then in developmental pediatrics. He was initially at the hospitals of the Case Western Reserve University in Cleveland Ohio from 1976-1980 and then moved to the Children's Hospital in Boston and the Harvard Medical School from 1980-1994. In July 1994 he moved to Atlanta, Georgia as Director of Developmental Pediatrics at Emory University and as Medical Director of the Marcus Center. Since 1998, he has been involved with the Southeast Pediatric Environmental Health Specialty Unit at Emory University, where he has integrated his understanding of developmental disabilities into the world of environmental health. In May 2004, he founded the Institute for the Study of Disadvantage and Disability (now Innovative Solutions for Disadvantage and Disability), which is dedicated to improving awareness and understanding of the relationship between social and economic disadvantage and disabilities in children. In September 2004, he left Emory University, and joined the faculty of Morehouse School of Medicine. He is the recipient of the 2012 Calvin J Sia Award from the American Academy of Pediatrics for work on a Medical Home for Homeless Children and also through the ISDD of the 2013 Martin Luther King Jr Award from Emory University Business School and School of Public Health for the work of ISDD in improving the lives of children who grow up in circumstances of social and economic disadvantage. E-mail: lrubi01@emory.edu

Joav Merrick, MD, MMedSci, DMSc,
is professor of pediatrics, child health and human development, Division of Pediatrics, Hadassah Hebrew University Medical Center, Mt Scopus Campus, Jerusalem, Israel and Kentucky Children's Hospital, University of Kentucky, Lexington, Kentucky United States and professor of public health at the Center for Healthy Development, School of Public Health, Georgia State University, Atlanta, United States, the medical director of the Health Services, Division for Intellectual and Developmental Disabilities, Ministry of Social Affairs and Social Services, Jerusalem, the founder and director of the National Institute of Child Health and Human Development in Israel. Numerous publications in the field of pediatrics, child health and human development, rehabilitation, intellectual disability, disability, health, welfare, abuse, advocacy, quality of life and prevention. Received the Peter Sabroe Child Award for outstanding work on behalf of Danish Children in 1985 and the International LEGO-Prize ("The Children's Nobel Prize") for an extraordinary contribution towards improvement in child welfare and well-being in 1987. E-mail: jmerrick@zahav.net.ilDonald E. Greydanus, MD, Dr. HC (ATHENS), FAAP, FSAM (Emeritus), FIAP (HON) is Professor and Founding Chair of the Department of Pediatric and Adolescent Medicine, as well as Pediatrics Program Director at the Western Michigan University Homer Stryker MD School of Medicine (WMED), Kalamazoo, Michigan, USA. He is also Professor of Pediatrics and Human Development at Michigan State University College of Human Medicine (East Lansing, Michigan, USA) as well as Clinical Professor of Pediatrics at MSU College of Osteopathic Medicine in East Lansing, Michigan, USA. Received the 1995 American Academy of Pediatrics' Adele D. Hofmann Award for "Distinquished Contributions in Adolescent Health", the 2000 Mayo Clinic Pediatrics Honored Alumnus Award for "National Contributions to the field of Pediatrics," and the 2003 William B Weil, Jr., MD Endowed Distinguished Pediatric Faculty Award from Michigan State University College of Medicine for "National and international recognition as well as exemplary scholarship in pediatrics." Received the 2004 Charles R Drew School of Medicine (Los Angeles, CA) Stellar Award for contributions to pediatric resident education and awarded an honorary membership in the Indian Academy of Pediatrics-an honor granted to only a few pediatricians outside of India. Was the 2007-2010 Visiting Professor of Pediatrics at Athens University, Athens, Greece and received the Michigan State University College of Human Medicine Outstanding Community Faculty Award in 2008. In 2010 he received the title of Doctor Honoris Causa from the University of Athens (Greece) as a "distinguished scientist who through outstanding work has bestowed praise and credit on the field of adolescent medicine (Ephebiatrics)." In 2010 he received the Outstanding Achievement in Adolescent Medicine Award from the Society for Adolescent Medicine "as a leading force in the field of adolescent medicine and health." Past Chair of the National Conference and Exhibition Planning Group (Committee on Scientific Meetings) of the American Academy of Pediatrics and member of the Pediatric Academic Societies' (SPR/PAS) Planning Committee (1998 to Present). In 2011 elected to The Alpha Omega Alpha Honor Society (Faculty member) at Michigan State University College of Human Medicine, East Lansing, Michigan. Former member of the Appeals Committee for the Pediatrics' Residency Review Committee (RRC) of the Accreditation Council for Graduate Medical Education (Chicago, IL) in both adolescent medicine and general pediatrics. Numerous publications in adolescent health and lectureships in many countries on adolescent health. E-mail: donald.greydanus@med.wmich.eduDilip R Patel, MD, MBA, FAAP, FAACPDM, FACSM, CPHQ, CMQ, CPE, is professor in the Department of Pediatric and Adolescent Medicine, Western Michigan University Homer Stryker MD School of Medicine, Kalamazoo, and Department of Pediatrics and Human Development at the Michigan State University College of Human Medicine, East Lansing, Michigan, USA. He is a full time teaching faculty member in the Pediatric Residency Program at Western Michigan University School of Medicine, Kalamazoo, USA. Dr Patel has subspecialty training and interests in neurodevelopmental disabilities, developmental-behavioral pediatrics, adolescent medicine and sports medicine. He has published numerous papers on a wide ranging topics in these areas and has edited several special symposia and books. E-mail: dilip.patel@med.wmich.edu

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