ATHN CV: Peer-Reviewed Poster Presentations

US Cohort Study of Previously Untreated Patients with Congenital Hemophilia (ATHN 8: PUPS Matter Study) Interim Analysis of the 2010-2019 Birth Cohort
Authors: Carpenter S, He C, Malec L, Payne A, van den Berg M, Watson C, Thornburg C International Society on Thrombosis and Haemostasis (ISTH) 2020 Virtual Congress, July 11-14, 2020.

ATHN 7: A Natural History Cohort Study of the Safety, Effectiveness, and Practice of Treatment for People with Hemophilia – Demographics and Preliminary Results
Authors: Buckner T, Daoud N, Croteau S, Kempton CL, Malec L, Staber J, Wang M, Watson C, Recht M International Society on Thrombosis and Haemostasis (ISTH) 2020 Virtual Congress, July 11-14, 2020.

Evaluation of Factors Associated with Prophylaxis Treatment Regimen among Men with Hemophilia B Participating in the Community Counts Registry from 2014-2018
Authors: Bethea F, Kempton C, Hayat M International Society on Thrombosis and Haemostasis (ISTH) 2020 Virtual Congress, July 11-14, 2020.

Lack of inhibitor development after switching to antihemophilic factor (recombinant), pegylated in the American Thrombosis and Hemostasis Network (ATHN) 2: Factor Switching Study
Authors: Journeycake J, Cheng D, Guelcher C, Lattimore S, Ragni M, Recht M, Sidonio R, Takemoto C, Tarantino M, Watson C, Neufeld, EJ International Society on Thrombosis and Haemostasis (ISTH) 2020 Virtual Congress, July 11-14, 2020.

A study of dedicated haemophilia carrier clinics in the United States: Prevalence, services offered and barriers to development
Authors: Marshall A, Recht M, Sridharan M, Nichols W, Ashrani A, Fischer K, Miles M, Riedel A, Pruthi R World Hemophilia Foundation (WFH) Virtual Summit, June 14-19, 2020.

A Study of Hemophilia Carrier Clinics in the United States
Authors: Marshall A, Recht M, Sridharan M, Nichols W, Ashrani A, Fischer K, Miles M, Riedel A, Pruthi R World Hemophilia Foundation (WFH) Virtual Summit, June 14-19, 2020.

Management of inhibitors in non-severe hemophilia A patients in the United States: A multicenter, registry-based, observational study
Authors: Lim M, Cheng D, Kempton C, Key N WWorld Hemophilia Foundation (WFH) Virtual Summit, June 14-19, 2020.

Lack of inhibitor development after switching to antihemophilic factor (recombinant), pegylated in the American Thrombosis and Hemostasis Network (ATHN) 2: Factor Switching Study
Authors: Sidonio R, Cheng D, Guelcher C, Journeycake J, Lattimore S, Takemoto C, Tarantino M, Watson C, Neufeld, EJ, and the ATHN 2 investigators American Society of Hematology (ASH) 61st Annual Meeting, Orlando, FL, December 7-10, 2019.

Transition of Care for Adult and Pediatric Patients with Venous Thromboembolism – An American Thrombosis and Hemostasis Network (ATHN) Project
Authors: DeSancho M, Malone M, Munn J, Billet H, Cheng D, Watson C, Rajpurkar M International Society on Thrombosis and Hemostasis (ISTH), July 6-10, 2019, Melbourne, Australia

Transition of Care for Pediatric and Adult Patient with Venous Thromboembolism in the American Thrombosis Hemostasis Network
Authors: Rajpurkar M, Malone M, Munn J, Jaffray J, Watson C, Cheng D, DeSancho M, and the ATHN 4 investigators American Society of Hematology (ASH), December 1-4, 2018, San Diego, CA

Epidemiology of Inhibitors in Persons with Severe Hemophilia A in the United States: Analyses of a National Database
Authors: Sande CM, Payne AB, Kempton CL, Manco-Johnson MJ, Sharathkumar AA American Society of Hematology (ASH), December 1-4, 2018, San Diego, CA

Opioid Use in Hemophilia Is Under-Reported in the ATHNdataset: A Call to Action
Authors: Peltier SJ, Mazepa MA, Nelson SF, Cheng D, Reding MT ATHN Data Summit 2018, October 25-26, 2018, Chicago, IL

The Effect of Socioeconomic Status and Urbanization on Rates of Self-Infusion and Bleed Rate in Adolescents with Severe Hemophilia
Authors: Agnew C, Apollonsky N, Cheng D ATHN Data Summit 2018, October 25-26, 2018, Chicago, IL

Transition of Care for Adult Patients with Venous Thromboembolism
Authors: DeSancho M, Malone M, Holmes C, Billett H, Wang TF, Cheng D, McCarthy E, Watson C, Rajpurkar M ATHN Data Summit 2018, October 25-26, 2018, Chicago, IL

First Look at My Life, Our Future Carrier Data from a Pilot Site
Authors: Puetz J, Johnson L, Hugge C, Buchanan P The International Society on Thrombosis and Haemostasis (ISTH) 64th Annual Scientific and Standardization Committee (SSC) meeting, July 18-21, 2018, Dublin, Ireland

Inpatient to Outpatient Transition of Care for Pediatric Patients with Venous Thromboembolism
Authors: Munn J, Rajpurkar M, Patel K, Journeycake J, Sharathkumar A, Wang M, Watson C, Cheng D, DeSancho M, Jaffray J The International Society on Thrombosis and Haemostasis (ISTH) 64th Annual Scientific and Standardization Committee (SSC) meeting, July 18-21, 2018, Dublin, Ireland

Extended half-life factor concentrate use for patients with moderate and severe hemophilia among U.S. HTCs
Authors: Croteau SE, Cheng D, Cohen AJ, Holmes CE, Kouides P, Raffini LJ, Silvey M, Thornburg C, Wheeler AP, Neufeld EJ The International Society on Thrombosis and Haemostasis (ISTH) 64th Annual Scientific and Standardization Committee (SSC) meeting, July 18-21, 2018, Dublin, Ireland

Transition of Care for Patients with Venous Thromboembolism: A Quality Improvement Project with the American Thrombosis and Hemostasis Network
Authors: Malone M, DeSancho M, Munn JE, Jaffray J, Cheng D, Watson C, Rajpurkar M Thrombosis & Hemostasis Societies of North America (THSNA), March 8-10, 2018, San Diego, CA

Characteristics of Males with Hemophilia in the United States Hemophilia Treatment Center Network (USHTCN) with New-Onset Elevated Inhibitor Titers, December 15, 2013-December 31, 2016
Authors: Manco-Johnson MJ, Soucie JM, Sharathkumar A, Bethea F, Kempton CL, Payne AB, Wang M, Miller CH American Society of Hematology (ASH), December 9-12, 2017, Atlanta, GA

Chronic Kidney Disease in the U.S. Hemophilia Population: A Cohort Study
Authors: Sood S, Cheng D, Shapiro A, Kessler C, Key N, Quon D, Eyster ME, Manco-Johnson M, Kempton C, Cuker A, Ragni M, Gill JC, Kuriakose P, von Drygalski A, Kouides P, Escobar MA, Paroskie A, Wang TF, Leissinger C, Galdzicka S, Konkle B American Society of Hematology (ASH) 59th Annual Meeting, December 9-12, 2017, Atlanta, GA

A Survey of F8 and F9 Variants in My Life, Our Future for Evidence of Alternative Splicing in Hemophilia
Authors: Johnsen JM, Kircher M, Fletcher SN, Huston H, Lannert K, Roberge S, Martin BK, Josephson NC, Shendure J, Ruuska S, Koerper MA, Morales J, Pierce G, Aschman DJ, Konkle B International Society on Thrombosis and Hemostasis (ISTH) Congress, July 8-13, 2017, Berlin, Germany

ATHN 4: Transition of Care for Patients with VTE Transition of Care for Patients with Venous Thromboembolism: A Quality Improvement Project with the American Thrombosis and Hemostasis Network
Authors: Jaffray, J, DeSancho, M, Munn, JE, Watson, CD, McCarthy, EG and Rajpurkar, M HTRS 2017 Scientific Symposium, April 6-8, 2017, Scottsdale, AZ

ATHN 2: Factor Switching Study – A Real-World Assessment of New Coagulation Factors through the American Thrombosis and Hemostasis Network (ATHN)
Authors: Neufeld, EJ, Journeycake, JM, Aschman DJ, Cheng, D, McCarthy, EG, Watson, CD and the ATHN 2 Steering Committee HTRS 2017 Scientific Symposium, April 6-8, 2017, Scottsdale, AZ

A “Genotyping Day” to Facilitate Efficient Enrollment for a National Project
Authors: Smith J, Hatcher N, Patterson F, Martinez R, Balasa V American Thrombosis and Hemostasis Network (ATHN) Data Summit, October 6-7, 2016, Chicago, IL

New Hemophilia Treatment Center Staff Orientation: A Standardized Approach
Authors: Droze K, Packman J, Forsberg A, Butler R, Tussing T World Federation of Hemophilia, Orlando, FL, July 24-28, 2016

Practice Characteristics of Genetic Counselors Serving the North American Bleeding Disorders Community
Authors: Malouin R, Bergstrom K, Heiman M, Paulyson Nunez K, Forsberg A and the NHPCC Genetics Working Group World Federation of Hemophilia, Orlando, FL, July 24-28, 2016.

Genetic Variant Analysis in Children and Adults with Hemophilia: Experience from a Large Hemophilia Center in the US
Authors: Lemons J, Escobar M, Cantini M, Cannon K, Brown D, Nguyen T and Rodriguez N, The University of Texas Health Science Center at Houston, Houston, TX, USA World Federation of Hemophilia, Orlando, FL, July 24-28, 2016.

A Cross-Sectional Study of Females with Congenital Bleeding Disorders Enrolled in the ATHNdataset
Authors: Authors: Haley K, Sidonio R, Cheng D, Shapiro A, Manco-Johnson M, Aschman D, Recht M World Federation of Hemophilia, Orlando, FL, July 24-28, 2016.

National Survey of the 340B Drug Pricing Program: Quantitative Evaluation of the Services Provided by the U.S. Hemophilia Treatment Centers
Authors: Trujillo M, Forsberg AD, Drake J, Cheng D, McLaughlin K, McKernan L World Federation of Hemophilia, Orlando, FL, July 24-28, 2016.

Joint Outcomes in United States (U.S.) Hemophilia Patients: A Report of the Community Counts Registry
Authors: Manco-Johnson M, Recht M, Kulkarni R, Dupervil B, Byams B, Dudley B, Aschman D, Voutsis M, Humes S, Oakley M World Federation of Hemophilia, Orlando, FL, July 24-28, 2016.

A “Genotyping Day” to Facilitate Efficient Enrollment for a National Project
Authors: Smith J, Hatcher N, Martinez R, Balasa V, Hemophilia Treatment Center, Valley Children’s Hospital, Madera, California World Federation of Hemophilia, Orlando, FL, July 24-28, 2016.

Radionuclide Synovectomy/Synoviorthesis in Patients with Bleeding Disorders: A Review of Malignancy and Myeloproliferative Neoplasms from the ATHNdataset
Authors: Sharma R, Dunn AL, Cheng D, Ahuja S, Aschman D, Carpenter S, Davis J, French J, Gruppo R, Knoll C, Lim M, McGuinn C, Pipe S, Sanders J, Sidonio R, Soni A, Stein D, Tarantino M, Wheeler A, Young G, Shapiro A Thrombosis and Hemostasis Societies of North America, Chicago, IL April 14-16, 2016.

Analysis of F8 And F9 Variants in the First 3000 Hemophilia A and B Patients in the My Life, Our Future (MLOF) Project
Authors: Konkle B, Johnsen JM, Ruuska S, Koerper MA, McAllister S, Aschman DJ Thrombosis and Hemostasis Societies of North America (THSNA) Summit, April 14-16, 2016, Chicago, IL

Radionuclide Synovectomy/Synoviorthesis (RS) in Patients with Bleeding Disorders: A Review of Effect of Seminal Publications on Frequency of RS using the ATHNdataset
Authors: Haley K, Sidonio R, Cheng D, Shapiro A, Manco-Johnson M, Aschman D, Recht M Thrombosis and Hemostasis Societies of North America, Chicago, IL April 14-16, 2016.

Radionuclide Synovectomy/Synoviorthesis (RS) in Patients with Bleeding Disorders: A Review of Demographics and Procedure-Related Outcomes from the ATHNdataset
Authors: Lim M, Aschman D, Ahuja S, Carpenter S, Cheng D, Davis JA, French J, Gruppo R, Knoll C, McGuinn C, Pipe S, Sanders J, Shapiro A, Sidonio R, Soni A, Stein DT, Tarantino MD, Wheeler A, Young G, Dunn A Thrombosis and Hemostasis Societies of North America, Chicago, IL April 14-16, 2016.

Lessons Learned from the Development of an Educational Curriculum for Potential and Confirmed Female Carriers of Hemophilia
Author: Butler R, Alabek M, Deery D, Miller K, Cutter S National Society of Genetic Counselors 3rd National Education Conference, Pittsburgh, PA, October 23, 2015. (Project of National Significance funded by the NHPCC through HRSA grant #UC8MC24079)

My Life, Our Future: A “Genotyping Day” to Facilitate Efficient Enrollment
Authors; Smith J, Hatcher N, Patterson F, Ruthrolen M, and Balasa V National Hemophilia Foundation 67th Annual Meeting, Dallas, TX, August 13-15, 2015. (Collaborating investigator team in My Life, Our Future)

U.S. Surveillance of Prophylaxis Use Among Persons with Hemophilia A Receiving Care at Hemophilia Treatment Centers (HTCs)
Authors: Manco-Johnson M, Byams V, Cooke B, Recht M, Aschman D, Dudley B, Voutsis M and Oakley, M International Society of Thrombosis and Haemostasis, (ISTH) 2015 Congress, Toronto, Canada, June 23, 2015. (Award winning!)

Expanding Telemedicine to Medical Homes for Comprehensive Care Delivery for Persons with Hemostatic Disorders: A Pilot Study of the American Thrombosis and Hemostasis Network (ATHN)/National Hemophilia Program Coordinating Center (NHPCC)
Authors: Kulkarni R, Malouin R, Vallad-Hix C, Carlson L, Bird M, Aschman D, Forsberg A, Trost Z and Greenhoe R International Society of Thrombosis and Haemostasis (ISTH) 2015 Congress, Toronto, Canada, June 23, 2015. (Project of National Significance funded by the NHPCC through HRSA grant #UC8MC24079)

A Cross-Sectional Analysis of Cardiovascular Disease in the Hemophilia Population
Authors: Sood SL, Cheng D, Shapiro AD, Kessler CM, Key NS, Quon DV, Eyster E, Manco-Johnson MJ, Kempton CL, Fogarty PF, Ragni MV, Gill J, Kuriakose P, von Drygalski A, Kouides PA, Escobar MA, Ne AT, Wang TF, Leissinger CA, Galdzicka S and Konkle BA American Society of Hematology 56th Annual Meeting, San Francisco, CA, December 6-9, 2014.

A Cross-Sectional Analysis of Cardiovascular Disease in the Hemophilia Population
Authors: Sood SL, Cheng D, Shapiro AD, Kessler CM, Key NS, Quon DV, Eyster E, Manco-Johnson MJ, Kempton CL, Fogarty PF, Ragni MV, Gill J, Kuriakose P, von Drygalski A, Kouides PA, Escobar MA, Neff AT, Wang TF, Leissinger CA, Galdzicka S and Konkle BA American Society of Hematology 56th Annual Meeting, San Francisco, CA, December 6-9, 2014.

My Life, Our Future: A Multi-Sector Collaboration to Provide Genotyping Services and a Research Repository for the Hemophilia Community Expands from Pilot to National Program
Authors: Aschman DJ, Koerper M, Ruuska S, McAlister S, Eyster E, Baker L, Tarantino M, Gonzales S and Konkle B American Public Health Association, New Orleans, LA, November 16-19, 2014.

Hemophilia Genotyping Results from the My Life, Our Future Project
Aschman D, Eyster E, Pipe S, Tarantino M, Shapiro A, Kempton C, Ruuska S, McAlister S, Bias V, and Konkle BA National Hemophilia Foundation 66th Annual Meeting, Washington, DC, September 18-20, 2014.

Community Counts: A US National Surveillance System for Bleeding and Clotting Disorders
Authors: Manco-Johnson M, Dudley B, Oakley M, Recht M, Kapica S, Presley RJ, Byams V, Cooke B and Aschman DJ World Federation of Hemophilia, Melbourne, Australia, May 11-15, 2014.

Patients’ Perceptions of Care at the US Federally Funded Hemophilia Treatment Centers
Authors: Forsberg, A, Butler RB, Cutter S, Curtis R, Shapiro AD, Sharathkumar A and Aschman DJ World Foundation of Hemophilia 2014 World Congress, Melbourne, Australia, May 11-15, 2014.

Community Counts: Preliminary Report of a National Surveillance System for Bleeding and Clotting Disorders
Authors: Manco-Johnson M, Dudley B, Oakley M, Recht M, Kapica S, Presley RJ, Byams V, Cooke B and Aschman DJ Thrombosis and Hemostasis Summit of North America Scientific Meeting, Chicago, IL, April 10-12, 2014.

Hemophilia Genotyping Results from the My Life, Our Future Project: An Update
Authors: Konkle BA, Tarantino M, Eyster E, Pipe S, Ruuska S, Shendure J, Johnsen J, McAlister S, Bias V, Pierce GF and Aschman D, Thrombosis and Hemostasis Summit of North America Scientific Meeting, Chicago, IL, April 10-12, 2014.

Technical Assistance Needs to Support Care Delivery for Patients with Bleeding Disorders: Findings from a National Survey of Hemophilia Treatment Centers
Authors: Bellinger JD, Iyer MR, Martin A, Aschman DJ and Forsberg A Academy Health, 2014.

Utilizing National Electronic Data Infrastructure to Longitudinally Follow the United States (US) Bleeding Disorders Population
Authors: Manco-Johnson M, Dudley B, Oakley M, Recht M, Kapica S, Byams V, Cooke B and Aschman DJ American Public Health Association Annual Meeting, Boston, MA, November 4, 2013.

My Life, Our Future: A Multi-Sector Partnership to Generate Genotype and Research Data Within the Hemophilia Community
Authors: Keebaugh K, Koerper M, Frick N, McAlister S and Aschman DJ American Public Health Association Annual Meeting, Boston, MA, November 4, 2013.

Survey of the Support Needs of the HTC Staff by National Hemophilia Program Coordinating Center
Authors: Forsberg A, Butler B, McLaughlin K, Baker J, Oldfield D and Aschman D National Hemophilia Foundation Annual Meeting, Anaheim, CA, October 3-5, 2013.

The ATHNdataset: A Growing Resource for Outcomes Analysis
Authors: Konkle B, Neufeld E, and Aschman D on behalf of the American Thrombosis and Hemostasis Network Affiliates Hemostasis and Thrombosis Research Society, Chicago, IL, June 14, 2013.

My Life, Our Future: A Multi-Sector Collaboration to Provide Genotyping Services and a Research Repository for the Hemophilia Community
Authors: Konkle B, Aschman DJ, Bias V and Pierce G American Public Health Laboratories Newborn Screening Symposium, Atlanta, GA, May 5-10, 2013.

The ATHNdataset: A Collaborative Effort to Build a National Standardized Data Source from Within the Hemostasis and Thrombosis Community
Authors: Konkle B, Abshire T and Aschman D on behalf of the American Thrombosis and Hemostasis Network Affiliates National Hemophilia Foundation Annual Meeting, Orlando, FL, November 8-10, 2012.

ATHNadvoy: A Collaborative and Community-Driven Approach for Innovation in Electronic Bleed and Infusion Logging Technology
Authors: Watson C and Keebaugh K with ATHNadvoy Beta-Testers National Hemophilia Foundation Annual Meeting, Orlando, FL, November 8-10, 2012.

A Standards-Based Information Infrastructure for Rare Bleeding and Clotting Disorders
Authors: Forsberg A, Parker LH, Thomas J and Aschman DJ on behalf of ATHN American Public Health Association, San Diego, CA, October 25-29, 2008.

American Thrombosis and Hemostasis Network: Expanding Capacity for Electronic Data Management
Author: Aschman DJ World Federation of Hemophilia, Istanbul, Turkey, June 1-5, 2006.