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Poster Abstracts - By Title

 
 
PSO 87 A look from within: a needs assessment of educational support for the Rare Bleeding Disorders Community
Waite-Ardini, Sarah; Nammacher, Kate; Abruzzo, Gianna
CTM 18 A multidisciplinary approach to the successful transition of a complex patient with severe hemophilia A with inhibitor to Emicizumab (Hemlibra®): A Case Study
Schmidt, Kirstin Schmidt; Haffler, Donna; Busam, Mary
WR 50 A retrospective chart review to assess clinical characteristics of women and girls with factor VIII and IX deficiency
Chaudhury, Ateefa; Tsao, Elisa; Kulkarni, Roshni; Sidonio, Robert; Tymoszczuk, Justyna; Jain, Nisha; Oviedo Ovando, Mariana
I 67 A Retrospective Study Evaluating Immune Tolerance Induction (ITI) with a Plasma-derived Factor VIII for Patients with Hemophilia A and High Titer Inhibitor
Escobar, Miguel; Amega, Novinyo Serge; Shaffer, Linda; Holguin, Mark; McCavit, Timothy
I 30 A survey among patients with hemophilia and inhibitors seeking treatment in non-hemophilia treatment centers
Davis, Joanna A.; De Moerloose, Philippe; Benchikh El Fegoun, Soraya; Habis, Richard; Klamroth, Robert
BCR 24 A Unique Combination of Severe Congenital Factor XIII Deficiency and Type 2M Von Willebrand Disease – A Case Report
Selvaraj, Sundar Rajan; Bockenstedt, Paula; Pipe, Steven
NP 07 ACUTE LYMPHOBLASTIC LEUKEMIA IN A PEDIATRIC PATIENT WITH HEMOPHILIA B: A RARE CLINICAL CHALLENGE
Abraham, Shirley; Kiser, Riyan
CRA 22 AMT-061 (AAV5-Padua hFIX variant) an Enhanced Vector for Gene Transfer in Adults with Severe or Moderate-Severe Hemophilia B: Follow-up up to 9 Months in a Phase 2b trial
Giermasz, Adam; von Drygalski, Annette; Castaman, Giancarlo; Key, Nigel; Lattimore, Susan; Leebeek, Frank; Miesbach, Wolfgang; Recht, Michael; Long, Alison; Gut, Robert; Pipe, Steven W
QOL 29 An evaluation of health utility and quality-of-life in hemophilia: a systematic literature review
Martin, Antony; Shaikh, Anum; Asghar, Sohaib; Evans, Jonathan; O'Hara, Jamie; Sawyer, Eileen K; Li, Nanxin (Nick)
CRA 54 Baseline patient characteristics in ReITIrate: A prospective study of rescue ITI with recombinant factor VIII Fc fusion protein (rFVIIIFc) in patients who have failed previous ITI attempts
Lethagen, Stefan; Königs, Christoph; Meeks, Shannon; Malmström, Håkan; Jain, Nisha
PI 28 Behavioral Health and Substance Use Screening Practices among Hemophilia Treatment Centers
Pfost, Gretchen Pfost; Robinson, Jordan; Jarvis, Aerial; Stevenson, Angela; Karim, Rania
CRA 20 Bleeding types and treatments in patients with von Willebrand disease before and after diagnosis
Hale, Sarah; Roberts, Jonathan; Malec, Lynn; Halari, Imrran; Oladapo, Abiola; Sidonio, Robert
CRA 45 Clinical experience with BIVV001, the first investigational factor VIII (FVIII) therapy to break through the von Willebrand factor (VWF) ceiling in hemophilia A
Konkle, Barbara A.; Shapiro, Amy; Quon, Doris V.; Staber, Janice M; Suzuki, Takashi; Kulkarni, Roshni; Ragni, Margaret V.; Lissitchkov, Toshko; Chhabra, Ekta Seth; Poloskey, Stacey; Rice, Kara; Katragadda, Suresh; Fruebis, Joachim
CRA 46 CLINICAL STUDY TO INVESTIGATE THE EFFICACY AND SAFETY OF WILATE DURING PROPHYLAXIS IN PREVIOUSLY TREATED PATIENTS WITH VON WILLEBRAND DISEASE (VWD)
Schwartz, Bruce; Sidonio, Robert
QOL 64 Combining Data from Hemophilia Registries with the World Bleeding Disorders Registry: A Proof of Concept Study with the Czech National Haemophilia Programme Registry
Naccache, Mayss Naccache; Engren, Johan; Blatny, Jan; Ovesna, Petra; Pierce, Glenn F; Coffin, Donna
BCR 61 Correcting Bleeding Disorders Using Blood Clotting Factors Produced in vivo by Encapsulated Engineered Allogeneic Human Cells
Carmona, Guillaume; Barney, Lauren; Sewell, Jared; Newman, Ryan; Carroll, Christine; O'Connor, Owen; Huang, Janet; Heidebrecht, Richard; Corzo, Deya; Moller, David; Smith, Devyn; Peritt, David; Vivaldi, Rogerio
QOL 63 Data is the new currency: The World Bleeding Disorders Registry Data Quality Accreditation Program
Youttananukorn, Worachanok Toong; Coffin, Donna; Naccache, Mayss; Tootoonchian, Ellia; Byams, Vanessa; Hermans, Cedric; Diop, Saliou; Noone, Declan; O'Hara, Jamie; Pierce, Glenn F; van den Berg, Marijke; Iorio, Alfonso; Konkle, Barbara
PI 12 Depression in hemophilia and von Willebrand using the Beck Depression Inventory
ABREU BASTAR, ANA PAOLA; ABREU BASTAR, ANA LAURA; ESCOBAR RUIZ, VALERIA
BCR 70 Development of a plasminogen activator 1 (PAI-1) variant to modulate bleeding
Haynes, Laura; Huttinger, Zachary; Ginsburg, David
ORT 65 EVALUATION OF JOINT BLEEDS USING PORTABLE ULTRASOUND AND ITS IMPACT ON TREATMENT OF PERSONS WITH HEMOPHILIA IN A RESOURCE LIMITED SETTING
Wanjiku, christopher mwaniki; Isaji, Samuel; Kaltenmark, Tiffany; Akins, Stacie
QOL 38 EVALUATION OF PATIENT AND PHYSICIAN REPORTED REASONS FOR SWITCHING FVIII REPLACEMENT THERAPIES AMONG PATIENTS WITH HEMOPHILIA A
Afonja, Olubunmi; Carpinella, Colleen M.; Aubert, Ronald; Farej, Ryan; Mulvihill, Emily; King-Concialdi, Kristen
CRA 73 Factor VIII deficiency is associated with abnormal brain volumes
Staber, Janice; Al-Huniti, Ahmad; Novak, Marci; Harshman, Lyndsay; Nopoulos, Peggy
WR 39 Female Patients with Hemophilia A: A Claims-Linked Chart Review
Afonja, Olubunmi; Farej, Ryan; Batt, Katharine; Martin, Carolyn; Aubert, Ronald; Carlyle, Maureen; White, John; Sidonio, Robert
CRA 75 Five-year safety and efficacy of N8-GP (ESPEROCT®) in previously treated children with hemophilia A in the completed pathfinder 5 trial
Raffini, Leslie; Staber, Janice M; Yee, Donald L; Acharya, Suchitra; Clausen, Wan Hui Ong; Cooper, David L; Kearney, Susan
CRA 79 Five-year safety and efficacy of N9-GP (REBINYN®) in previously treated children with hemophilia B in the ongoing paradigm 5 trial
Kearney, Susan; Zia, Ayesha; Santagostino, Elena; Pietzko, Kerstin; Cooper, David L; Carcao, Manuel
CRA 80 Four-year safety and efficacy of N8-GP (ESPEROCT®) in previously treated adolescents/adults with hemophilia A in the completed pathfinder 2 trial
Escobar, Miguel; Wheeler, Allison P; Geybels, Milan S; Cooper, David L; Lentz, Steven
PI 57 Gender Differences in Parenting Stress and Social Support Among Hemophilia Families
Gates, Carletha
PI 74 HemoFOCUS Screener for Inattention, Hyperactivity and Impulsivity: A Quality Improvement Intervention for Children with Severe Hemophilia
Pullen, Amanda
PSO 86 Identification of Orthopedic and Genetic Needs Reported by Persons with Type 3/Severe Von Willebrand Disease
Cesta, Jeanette; Geary, Margeret; Kuebler, Edward
QOL 34 Increasing Medical Alert Devices (MAD) Compliance in School Age Children with Hemophilia: A Quality Improvement Project
Burge, Kara; Wilkerson, Brittany; Crary, Shelley
CRA 78 Modeling of Daily Administration of N8-GP (ESPEROCT®) vs Standard Half-life FVIII for Patients With Hemophilia A Participating in Sports Activities
Wheeler, Allison P; Wang, Michael; Chrisentery-Singleton, Tammuella; Chitlur, Meera; Kreilgaard, Mads; Cooper, David L; Escobar, Miguel
CTM 15 Navigating the Emergency Department: A Collaboration Among Hemophilia Treatment Center Staff, Emergency Department Staff & Bleeding Disorder Chapter Staff
Littner, Lisa; Tanago, Cristina; Otte, Ann; Lamping, Helen; Raterman, Lisa
LEH 84 NHF’s State Advocacy and the Bleeding Disorders Community
Harp, Dillon; Hayes, Brendan; Robie, Bill; Schaefer, Nathan
CRA 21 No evidence of germline transmission of vector DNA following intravenous administration of AAV5-hFIX to male mice
Spronck, Lisa; de Haan, Martin; Sawyer, Eileen; Heijink, Liesbeth; Twisk, Jaap
CRA 88 ONLINE CME AS A TOOL TO INCREASE CLINICIANS’ KNOWLEDGE OF CLINICAL TRIAL DATA FOR GENE THERAPY IN HEMOPHILIA
Hurst, Simi; Warren, Charlotte; Kadkhoda, Haleh; Van Laar, Emily
PSO 71 Optimizing language for effective communication of gene therapy concepts: A qualitative study
Arcé, Claire; Branchford, Brian; Hart, Daniel; Hendry, Sarah; Kelleher, Maria; Kim, Michelle; Ledniczky, Robert; Lee, Mimi; Lee, Sharon; Minshall, Matthew; Negrier, Claude; Prince, Steve; Rice, Michelle; Sidonio, Robert
BCR 26 Optimizing signal strength and suppressive potential of FVIII specific CAR Tregs for tolerance induction in a murine model of hemophilia A
Biswas, Moanaro; Herzog, Roland W; Brusko, Todd M; Rana, Jyoti
PI 60 Pain assessment and treatment in bleeding disorder care: The need for social work specific education
King, Jennifer
PI 31 Parents Empowering Parents (PEP) Community Survey: How does the community want to stay engaged, communicate, and receive information?
Nguyen-Driver, Mina
QOL 53 Patient Perspectives on the Impact of Severe or Moderate Hemophilia on Physical Activity: HemACTIVE Survey Findings from the US and Canada
Blamey, Greig; LeCleir, Gregory; Khair, Kate
QOL 33 Patients Report High Satisfaction with US Hemophilia Treatment Centers: National Trends 2014 and 2017
Lattimore, Susan; Baker, Judith; Riske, Brenda; Shearer, Rick; Ashton, Merilee
ORT 58 Physical Therapy and Extensions for Community Healthcare Outcomes (ECHO): Western States Hemophilia Regional Project
Tobase, Patricia
PI 83 Quality Improvement: An Initiative to Foster Mental Health Wellness among a Hemophilia Treatment Center Patient Population
Farina, Sabrina
QOL 11 Quality of life and health in patients with Haemophilia in Mexico
ABREU BASTAR, ANA PAOLA; ABREU BASTAR, ANA LAURA; ESCOBAR RUIZ, VALERIA
I 51 rFVIIIFc for first-time immune tolerance induction therapy: interim results from the global, prospective verITI-8 study
Malec, Lynn; Spasova, Mariya; Sharathkumar, Anjali; Chan, Anthony; Wright, Jordan; Reuter, Caroline; Carcao, Manuel; Konstantinov, Dobrin; Rodriguez, Nidra; Wang, Michael; Haya, Saturnino; Lethagen, Stefan; Jain, Nisha; Bhatnagar, Neha; Hwang, Nina; Van D
QOL 32 Satisfaction with Teen Transition Services at US Hemophilia Treatment Centers by Center – Variation by Pediatric and Lifespan Centers 2014 and 2017
Baker, Judith; Lattimore, Susan; Shearer, Rick; Ashton, Merilee; Riske, Brenda
I 82 Short-term efficacy of recombinant porcine factor VIII in patients with acquired factor VIII inhibitors
Abou-Ismail, Mouhamed Yazan; Vuyyala, Sowjanya; Prunty, Jeremy; Schmaier, Alvin; Nayak, Lalitha
NP 69 Tackling a New Era of Treatment in Hemophilia A: One Institution's Experience of Integrating Emicizumab into Practice
Hallam, Michelle
PSO 52 The Effect of Bleeding Disorder Characteristics on Patient Perceived Challenges and Management Strategies
Oleson, David
PI 77 The impact of face-to-face social work meetings in bleeding disorder care
King, Jennifer
QOL 90 The Patient Reported Outcomes Burdens and Experiences (PROBE) Study Questionnaire Development and Validation
Skinner, Mark; Chai-Adisaksopha, C.; O’Mahony, B.; Noone, D.; Curtis, R.; Frick, Neil; Nichol, M.; Page, D.; Stonebraker, J.; Iorio, A.
CRA 89 The Positive Impact of CME on Healthcare Providers’ Knowledge of Gene Therapy Studies in Hemophilia
Hurst, Simi; Warren, Charlotte; Kadkhoda, Haleh; Van Laar, Emily; Pipe, Steven
QOL 55 The WFH World Bleeding Disorders Registry – 16-month update
Naccache, Mayss; Coffin, Donna; Youttananukorn, Toong; Tootoonchian, Ellia; Byams, Vanessa; Diop, Saliou; Hermans, Cedric; Noone, Declan; O'Hara, Jamie; Pierce, Glenn F; van den Berg, Marijke; Iorio, Alfonso; Konkle, Barbara
CRA 59 Three-year efficacy and safety results from a phase 1/2 clinical study of AAV5-hFVIII-SQ gene therapy (valoctocogene roxaparvovec) for severe hemophilia A (BMN 270-201 study)
Kim, Benjamin; Rangarajan, Savita; Pasi, John; Mitchell, Nina; Lester, Will; Laffan, Michael; Madan, Bella; Symington, Emily; Yang, Xinqun; Pierce, Glenn; Wong, Wing
ORT 44 Use of Return to Sport Testing for Prevention of Bleeding Episodes Following an Acute Injury in the Hemophilia Patient
Horton, Rachel
PSO 17 Using Photovoice with the Bleeding Disorder Population: A Pilot Project
Littner, Lisa; Schulte, Christine; Lamping, Helen; Raterman, Lisa
I 85 Validation of a FVIII Chromogenic Nijmegen Bethesda Assay for the Detection of Inhibitors in the Presence of Emicizumab (ACE-910)
Tiefenbacher, Stefan; Shrotriya, Sangeeta; Robinson, Mary; Adamkewicz, Joanne; Steinbuesch, Diana
QOL 91 Von Willebrand Disease: An international Survey to Inform Priorities for New Guidelines
Kalot, Mohamad; Al-Khatib, Mohammed; Connell, Nathan; Flood, Veronica; Brignardello-Petersen, Romina; Clark, Cary; Castano, Jenny; Riker, Ellen; Robinson, Fiona; Skinner, Mark; James, Paula; Mustafa, Reem
WR 66 von Willebrand Factor in Pregnancy (VIP) Study: A Multicenter Study of Wilate Use in von Willebrand Disease for Childbirth
Johnsen, Jill; Ruuska, Sarah; Konkle, Barbara; Kouides, Peter
WR 81 Women and girls with hemophilia: Gender-based differences in comprehensive care
Fox, Laura
QOL 62 World Federation of Hemophilia Annual Global Survey 2017 – 19 years of reporting
Tootoonchian, Ellia; Coffin, Donna; Brooker, Mark; Stonebraker, Jeffrey S.; Iorio, Alfonso; Byams, Vanessa; El Ekiaby, Magdy; Makris, Mike; O'Hara, Jamie; Chambost, Hervé; Pierce, Glenn; Weill, Alain
QOL 56 World Federation of Hemophilia Annual Global Survey analysis of age distribution of patients with hemophilia
Tootoonchian, Ellia; Coffin, Donna; Brooker, Mark; Stonebraker, Jeffrey S.; Iorio, Alfonso; Byams, Vanessa; El Ekiaby, Magdy; Makris, Mike; O'Hara, Jamie; Chambost, Hervé; Pierce, Glenn; Weill, Alain