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1 ISONG 25 th Annual Conference Charting a Course for Genetic/Genomic Nursing: Practice, Education and Research Loews Philadelphia Hotel Philadelphia, Pennsylvania USA October 26-27, 2012

2 Invitation Conference Co-Chairs: Marlena Kern Gia Mudd Martin Conference Committee: Sheila Alexander Dennis Cheek Sarah Cook Willa Doswell Sandra Founds Ellen Giarelli Kathleen Hickey Lynette Howington Alice Kerber Meredith Kohn Mary Quinn Griffin Deborah MacDonald Susan Montgomery Priscilla O Connor Yolanda Powell-Young Ellen (Lynn) Rew Matthew Sorenson Kathleen Sparbel Kimberly A. Subasic Deb Tamura Susan Tinley Marie Twal Catherine Tymkow Linda Ward Ken Wysocki Erica Yu On behalf of the International Society of Nurses in Genetics (ISONG) Conference Committee and the Board of Directors, it gives us great pleasure to invite nurses and healthcare professionals in genetics and genomics to the Society s 25th Annual Conference in Philadelphia, Pennsylvania. ISONG is a global specialty organization dedicated to fostering the scientific and professional growth in human genetics and genomics worldwide. The conference provides a forum for nurses and other healthcare professionals dedicated to all aspects of human genetics including basic science research, clinical research, clinical practice and professional and lay education. This two-day conference is designed to provide a forum for discourse on genetics and genomics in healthcare and an opportunity for professional networking. The conference theme is Charting a Course for with the purpose to present research, educational, and clinical topics that promote the knowledge, science, and practice of clinical genetics and genomics. Topics include genetic and genomic advances related to biological pathways of health and disease that support application in clinical practice and efficacy in the delivery of genetic services. The 2012 Annual Meeting will help attendees to: Understand recent genetic scientific advances and implications for nursing research, education, and practice. Identify genetic pathways that influence the biology of health and disease. Understand genetic and genomic information related to both rare and common health conditions to improve health literacy. Develop and foster international interdisciplinary professional relationships for collaboration and support. Appreciate applications of genetic advances to guide diagnosis, therapeutic intervention, clinical efficacy, and decision-making processes. We hope you will be able to participate in the Conference and look forward to welcoming you to Philadelphia. Marlena Kern, DNP, RN Conference Co-Chair Gia Mudd Martin, PhD, MPH, RN Conference Co-chair RECEIVED Before After Oct 5 Oct 5 ISONG active dues member...$ $ Podium or Poster Presenter...$ $ Non-member (joining now)...$ $ (Includes membership fee) Non-member...$ $ Full-time students...$ $ (With copy of University/Program ID card) REGISTRATION Register early! It helps us plan better and keeps your costs down. Take advantage of the early registration discount by registering by October 5, The discounted rates are made available in order to facilitate administrative planning which is required prior to the Conference. Early registration deadline: October 5, 2012 On line registration and payment is available at Once you register, you will receive a confirmation letter from ISONG. If you do not receive a letter confirming receipt of your registration, please call us at to check your registration status, or contact us via at: ISONGHQ@msn.com.

3 Host Hotel Loews Philadelphia Hotel 1200 Market Street Philadelphia, Pennsylvania USA Phone: (main) Direct Link for ISONG Conference Hotel Reservations: Cut-off date for ISONG Conference room rate: October 5, 2012 Philadelphia has an exciting and unique combination that offers visitors the opportunity to explore four centuries of history and architecture, beautiful neighborhoods, remarkable museum collections and endless shopping. In the evening, the city heats up with acclaimed performing arts, amazing dining and vibrant nightlife. Boasting cobblestone streets and historical landmarks as the birthplace of the USA, Philadelphia is a blend of modern world class cultural, culinary, and artistic presence. Treasures abound in this city and its surrounding countryside. Known as the City of Brotherly Love, Philadelphia is home to an astounding collection of museums, artistic venues and historical attractions including: Franklin Square, Philadelphia Museum of Art, Valley Forge National Historical Park, The Liberty Bell Center, National Constitution Center, Logwood Gardens, Independence Hall, the Franklin Institute, The Barnes Foundation and The Rocky Statue. Before green was coined a thought, William Penn was inspired to create a greene countrie towne and today the Philadelphia region is blooming with parks and gardens, many of which grace the city s historic homes and art museums. Fairmont Park is the largest landscaped city park in the world with more than 8,500 acres and 2 million trees. At Penn s Landing, the spot where William Penn stepped ashore in 1682 is the hub of a 37 acre riverfront park with attractions and scores of boats and ships including the world s largest 4-masted tall ship, the Moshulu, which is also a restaurant. Art installations, award winning restaurants, world class shopping, jazz venues, architectural landmarks and more awaits you in Philadelphia! Travel Details Distance from the Philadelphia International Airport to the hotel is approximately 20 minutes. The following airport transportation options are available near the baggage claim area: Airport Shuttle - $10.00/One Way - (Visit for more details) Taxi Service - $29.50/one-way Regional Rail - $7.50 one-way (From any terminal at the airport, exit at the Market East Station and the Loews Hotel is across the street.) Rates are listed in USD before taxes and are subject to change 3 The hotel room rate is $ (USD) plus tax per night for Single/Double. Reserve your room early! The special conference rate and room availability cannot be guaranteed after the October 5th cut-off date. Attendees of the ISONG Conference will be pleased with the upscale accommodations in the Loews Philadelphia. The first skyscraper ever built in the City of Brotherly Love is home to the Loews Philadelphia Hotel. Contemporary décor and gracious hospitality make Loews hotel in Philadelphia one of Center City s most inviting luxury hotels. This hotel offers supremely comfortable rooms, the Breathe Spa and Fitness facility, a heated lap pool, a business center, concierge services and 24-hour in-room dining. Check in: 4 PM Check out: 12 PM Hotel Parking Valet Parking is available at $36/per 24 hours (with in and out privileges) Airline Reservation Assistance Sue Ryan at Travel By Design can assist interested parties in making their air transportation arrangements. Sue can be reached at: or tbdesign@ameritech.net. Note that a standard travel agency fee applies when using this service to book your flight.

4 CONTINUING EDUCATION CREDITS This provider-directed activity has been submitted to the University of Pittsburgh for approval to award contact hours. The University of Pittsburgh is accredited as an approver of continuing nursing education by the American Nurses Credentialing Center s Commission on Accreditation. EXHIBITS There will be an exhibit hall at the ISONG conference. Each participating company will have a table top display area and be able to interact personally with our attendees. Visit University Row this year, a new section in the exhibit area which will highlight genetic nursing programs. ISONG Raffle Registrants will be afforded a new opportunity to participate in an exciting raffle. All proceeds from the raffle will directly benefit the on-going goals and objectives of ISONG. Items will range in value and payment can be accepted as follows: cash (USD) checks drawn on US Bank or credit card payment (USD only) using Visa or Mastercard. DONATE A RAFFLE ITEM Please consider making a donation to the ISONG raffle. Our members hail from all over the world and we usually have an array of unique items. Bring something from your hometown, country or specific hospital or academic institution. Make sure that your item will travel well meaning it is compact, lightweight, and can be easily transported in a suitcase. Pictures, books, jewelry, music CDs, t-shirts, sweaters, chocolates, gift certificates, handmade items, autographed items and cultural items are just a few popular suggestions. Contact isonghq@msn.com with any questions regarding the raffle. We prefer that you carry the item with you to the Conference, but we will need a description of the item and its value, in advance, via to Linda Ward at: linward@wsu.edu All funds raised by the ISONG raffle will directly benefit our organization. ISONG RESEARCH AWARDS The purpose of the annual ISONG Nursing Research Grant award is to support research related to genetic nursing practice or that which contributes to the development of genetic nursing science. The Research Grant applications are available to ISONG members via the ISONG webpage and listserv approximately 2-3 months prior to the grant deadline. All grant submissions undergo rigorous peer review by a committee of Research Committee Members and the annual award (maximum of $1,500) is traditionally given to the principal investigator at the annual ISONG conference. Grant information and an application form can be found at SCIENTIFIC POSTERS All posters will be available for review on October 26-27, Posters must be removed during the morning break on Saturday, October 27. Authors will be available for small group discussions about their posters during the poster reception on Friday evening. 4

5 7:00am 8:00am Registration / Continental Breakfast Visit Exhibits / Poster set-up / Raffle 8:00am 8:15am Welcome ISONG President Ellen Giarelli, EdD, RN, CRNP Drexel University Philadelphia, Pennsylvania USA 8:15am 9:30am Opening Keynote Charting Genetic Discovery: Nurse-Led Personalized Care Maps for the Future Wendy Henderson, RN, MSN, CRNP, PhD Investigator Chief, Biobehavioral Unit Intramural Research Program National Institute of Nursing Research Bethesda, Maryland USA 9:30am 10:30am Plenary Speaker Autism Genetics/Genomics and Nursing Implications Norah Johnson, PhD, RN, CPNP Marquette University New Berlin, Wisconsin USA Friday, October 26, 2012 Panel Maggie Kirk, PhD, BSc (Hons), RGN Lead Professional Specialist University of Glamorgan Pontypridd, Wales United Kingdom Lori Farmer, ARNP, MS, MSN, APNG Advanced Practice Nurse in Genetics/ Adjunct Professor Pensacola State University Pensacola, Florida USA Emily E. Stevens, PhD, RN, WHNP, FNP-BC Assistant Professor of Nursing Chatham University Emma Tonkin, BSc (Hons), PhD Education Development Officer NHS National Genetics Education and Development Pontypridd, Wales United Kingdom 12:30pm 2:00pm ISONG Business Lunch and Awards 2:00pm 3:40pm Oral Abstract Breakout Session 1 Rooms A & B (see detail of abstracts on page 6) 10:30am 11:00am Registration / Refreshment Break / Visit Exhibits / Raffle 11:00am 12:30pm Hot Topics in Clinical Genetics: Innovations in Prenatal Screening and Diagnosis (supported by an educational grant from Sequenom) Sandra Founds, CNM, FNP, PhD Assistant Professor University of Pittsburgh 3:40pm 4:10pm Registration / Refreshment Break / Visit Exhibits / Raffle 4:10pm 5:30pm Oral Abstract Breakout Session 2 Rooms A & B (see detail of abstracts on page 7) 5:30pm 7:00pm Poster Session (see detail of poster abstracts on page 8) 5

6 Friday October 26, 2012 (continued) 2:00pm 3:40pm Oral Abstract Breakout Session 1 Room A A Video Resource to Enhance the Learning of Essential Genetic Core Competencies Marilyn Davies, PhD University of Pittsburgh School of Nursing Using Virtual Reality To Communicate About Genomics In The Healthcare Community Patricia Newcomb, PhD, RN, CPNP University of Texas - Arlington Arlington, Texas USA Genetics And Genomics Competency Education And Faculty-Perceived Importance In Prelicensure Nursing Programs Kathleen J.H. Sparbel, PhD, FNP-BC University of Illinois at Chicago Davenport, Iowa USA Assessment of Genetic and Genomic Knowledge among Baccalaureate Nursing Students: A Pilot Study Linda D. Ward, PhD Washington State University Spokane, Washington USA Generating Behavior Change: Feasibility And Preliminary Effects Of Genomic Risk Testing and Health Coaching For CHD In Primary Care Allison Vorderstrasse, DNSc, APRN Duke University Durham, North Carolina USA Room B Differential DNA Methylation Underlying Heritable Immunologic Alterations in Preeclampsia Cindy Anderson, PhD, WHNP-BC, FAAN University of North Dakota Grand Forks, North Dakota USA Psychosocial Functioning of Adolescents With Cystic Fibrosis (CF) Diagnosed Through Newborn Screening (NBS) Audrey Tluczek, PhD, RN University of Wisconsin-Madison Madison, Wisconsin USA The Association Between A Genetic Marker Within The Von Willebrand Factor Gene and Depression Screening Scores In Cardiac Patients Erica Yu, PhD The University of Texas Health Science Center, School of Nursing Houston, Texas USA Provider-Parent Communications in Newborn Screening Consultations: Clinical Challenges and Opportunities for Nursing Research Jane DeLuca, PhD, MS, CPNP University of Rochester Rochester, New York USA Potential Implications of Intrapartum Antibiotic Administration on Future Development of Disease Michelle Wright, MS, RN University of North Dakota Grand Forks, North Dakota USA 6

7 Friday October 26, 2012 (continued) 4:10pm 5:30pm Oral Abstract Breakout Session 2 Room A Room B CADASIL: A Case Report Carmen Paniagua, EdD, MNS, CPC, APN, ACNP-BC, APNG, FAANP University of Arkansas for Medical Sciences Little Rock, Arkansas USA Tasks of Korean Society of Genetic Nursing (KSGN): How can we accomplish collaborative genetic services with other disciplines? Jeeyae Choi, Doctorate University of Wisconsin Milwaukee Milwaukee, Wisconsin USA RT-PCR Confirmation Of Weight Gain Associated Gene Expression Profiles In Blood Of Kidney Transplant Recipients Ansley Stanfill, BSN, RN University of Tennessee Health Science Center Memphis, Tennessee USA Community Engagement and Establishing a Bio-Repository DNA Bank/Clinical Data Warehouse Ida Spruill, PhD, RN, LISW, FAAN Medical University of South Carolina Charleston, South Carolina USA ECCR2 Genotype and Cognitive Function in Postmenopausal Women with Early Stage Breast Cancer Prior to Initiation of Adjuvant Therapy Susan Wesmiller, PhD, RN University of Pittsburgh Genetic Literacy: What Do Our Incoming Students Know/ A Comparison Study of Two Undergraduate Nursing Cohorts John Twomey, BSN, MSN, PhD MGH Institute of Health Professions Wakefield, Rhode Island USA The Impact of Obesity on Prostate Cancer DNA Methylation Patterns and Biomarkers Jody Ralph, PhD, RN University of North Dakota Grand Forks, North Dakota USA The Evaluation Of Cytokine Genes And Anxiety In Oncology Patients And Their Family Caregivers Christina Baggott, RN, PhD, PNP-BC University of California, San Francisco San Francisco, California USA 7

8 Friday October 26, 2012 (continued) P01 Caregiving Stress and Immune Function: An Integrative Literature Review and New Conceptual Model Christina Slota, MS, BSN, RN University of Pennsylvania Philadelphia, Pennsylvania USA P02 Gene Therapy: Technological Development to Treat Genetic Disorders Cheryl Mele Drexel University Williamstown, New Jersey USA P03 Experiences Of High Risk Pregnant Women Undergoing Amniocentesis In Korea Myunghee Jun, PhD Daejeon University Glendale, Wisconsin USA P04 Adolescent Health and Genetics: Clinical Relevance for the Nurse Practitioner Tami Thomas, PhD, CPNP, RNC Emory University Atlanta, Georgia USA P05 Role of the Advanced Practice Genetics Nurse in a Breast Center Patricia Mazzola, FNP-BC, CNM, APNG Englewood Hospital and Medical center Englewood, New Jersey USA P06 Experience of the Families with Hereditary Colon Cancer Patients Kyung Sook Choi Chung-Ang University Seoul, Republic of Korea P07 Nursing Care For Children With PWS And Their Parents Saeko Kutsunugi, RN, PH, MSN Yamaguchi University Ube, Yamaguchi Japan Poster Session - 5:30 7:00pm P08 Consideration About the Decision Making Process of the Molecular Genetics Predictive Test Yuka Ozasa, PhD Tokyo Medical and Dental University Tokyo Japan P09 It Might Lead To An Answer. Examining Views On Incidental Findings Through Caregivers Narratives About Their Children s Diagnostic Dilemmas. Lisa Ungerer, BSN University of Iowa Iowa City, Iowa USA P10 Genomic Variation And Anxiety: Associations In Children Having A Medical Procedure Anne Ersig, PhD, RN University of Iowa Iowa City, Iowa USA P11 Methodologies of Effective Procurement for a Genotype-Driven Recruitment Registry of Healthy Controls Margaret DeFranco, RN, BSN Feinstein Institute for Medical Research Manhasset, New York USA P12 Family History And Cardiovascular Disease Risk In At-Risk Young Adults: A Pilot Intervention Study Christopher Imes, BSN University of Washington Seattle, Washington USA P13 Will Electronic Consenting Result In Faster Blood Sample Collection? Sally Kaplan, RN, RN Feinstein Institute for Medical Research Manhasset, New York USA P14 A Study To Evaluate Tools Used To Learn/Engage In The Healthcare Genetics Course Annamalar Jeyasehar, M.S Clemson University Clemson, South Carolina USA P15 Teaching Tools Used To Incorporate AACN Essentials Into Healthcare Genetics Course For Undergraduate BS Nurses Annamalar Jeyasehar, M.S Clemson University Clemson, South Carolina USA P16 Association of IL-33 and IL1RL1 Polymorphisms to Asthma Using Genome Wide Association Study Kenneth Wysocki, PhD, RN, FNP University of Pittsburgh P17 Genetics and Genomic Content in Basic Nursing Textbooks Helen Ann Gordon, MSN, MEd, PhD Case Western Reserve University Cleveland, Ohio USA P18 Evaluating the Role of Cardiac Nurses in Inherited Cardiac Conditions Services: Findings and Implications for Best Practice Maggie Kirk, PhD, BSc (Hons), RGN Lead Professional Specialist University of Glamorgan Pontypridd, Wales United Kingdom 8

9 Saturday October 27, :00am 8:00am Registration / Continental Breakfast / Visit Exhibits / Raffle (Raffle will end at 8:00am today) 7:15am - 8:00am Sunrise SIG Meetings 8:00am 8:30am Incoming ISONG President Keynote Kathleen Hickey, EdD, FNP, ANP Columbia University New York, New York USA 8:30am 9:30am Plenary Speaker Beyond The Voice-Over PowerPoint Engaging Nursing Students Where They Are Nancy Bowers, MSN, RN, CNS University of Cincinnati Cincinnati, Ohio USA 9:30am 9:50am Registration/Refreshment Break/ Visit Exhibits (Check your raffle tickets between now and 2:45) 9:50am 11:10am Oral Abstract Session 3 Room A Association Of Serotonin Transporter Gene Polymorphisms With Depressive Symptoms And Future Cardiac Events In Patients With Acute Coronary Syndrome Jennifer Sanner, PhD The University of Texas Health Science Center at Houston Houston, Texas USA Exploring Mechanisms of Variability in Preeclampsia Candidate Genes Sandra Founds, PhD University of Pittsburgh Use Of Qualitative Data To Inform The Development Of A Patient Decision Aid For Mutation Carriers Recommended To Undergo Risk Reducing Salpingo Oophorectomy Carol Cherry, MPH, MSN Fox Chase Cancer Center Philadelphia, Pennsylvania USA Genetics Influences on Risk of Stroke and Stroke Recovery Sheila Alexander, PhD, BSN University of Pittsburgh School of Nursing 11:10am 11:30am International Perspective: the Experiences of Genetic/Genomic Nurses in Brazil Milena Floria-Santos, PhD, RN University of Sao Paulo at Ribeirao Preto College of Nursing Maternal Child and Public Health Sao Paulo, Brazil 11:30am 12:45pm Boxed Lunch: ISONG Committee Meetings 12:45pm 1:45pm Plenary Speaker Epigenetic Impact of Childbirth: The EPIIC International Collaboration Cindy Anderson, PhD, WHNP-BC, FAAN University of North Dakota Grand Forks, North Dakota USA 1:45pm 2:45pm Closing Keynote Genetics in Clinical Practice: The Need or Transdisciplinary Education, Translation and Implementation Joan A. Scott, MS, CGC Executive Director National Coalition for Health Professional Education in Genetics (NCHPEG) Research Scientist Berman Institute of Bioethics Johns Hopkins University Washington, DC USA 2:45pm 3:00pm Conference Wrap-up and CEU Distribution 9

10 President Ellen Giarelli, EdD, RN, CRNP Philadelphia, Pennsylvania USA President-Elect Kathleen Hickey, EdD, FNP, ANP New York, New York USA Past President Kathleen Sparbel, PhD, APRN, BC, FNP Davenport, Iowa USA Treasurer Marie Twal, RN, CPNP Indiana, Pennsylvania USA Secretary Patricia Newcomb, PhD, RN, CPNP Arlington, Texas USA Board Members at Large Sarah Sheets Cook, DrNP, RN, CS Stanford, Connecticut USA Mary Quinn Griffin, PhD, RN Cleveland, Ohio USA 25th Annual ISONG Conference Committee Co-Chairs Marlena Kern, DNP, RN Manhasset, New York USA Gia Mudd Martin, PhD, MPH, RN Lexington, Kentucky USA Executive Director Beth A. Kassalen, MBA ISONG 461 Cochran Road, Box 246 Pittsburgh, Pennsylvania USA ISONG Administration Barbara Hamschin Pam Vogel Debbie Zaparoni

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