Investigators

• Mark W. Skinner JD

  President/CEO of the Institute for Policy Advancement, Ltd.
  Mark Skinner, Washington, DC, is President/CEO of the Institute for Policy Advancement, Ltd., a global health strategies consulting company specializing in patient-centered healthcare and outcomes research, and a Senior Consultant to the Workers Compensation Research Institute. He has led both national and international patient organizations, including the World Federation of Hemophilia and National Hemophilia Foundation, where he currently serves on the Medical and Scientific Advisory Council. He is an inaugural member of the Patient Centered Outcomes Research Institute (PCORI) advisory panel on rare disease. He is a board member of the American Thrombosis and Hemostasis Network and holds numerous roles as an advisor on critical blood safety and supply matters including serving on the US Health and Human Services Advisory Committee on Blood and Tissue Safety and Availability. Previously, he was Vice President of State Programs with the American Insurance Association and Administrative Assistant/Chief of Staff to the Speaker of the Kansas House of Representatives. He received degrees in Public and Business Administration from Kansas State University and a JD from Washburn University School of Law. PubMed Publications

• Chatree Chai-Adiskaksopha MD

  Division of Hematology, Department of Internal Medicine Chiang Mai University, Chiang Mai, Thailand
  Chatree is a clinical hematologist. After he completed medical degree, Internal Medicine and Hematology from Thailand, he completed a fellowship training in thrombosis and haemostasis at McMaster University, Canada. His PhD thesis was focusing on the patient reported outcomes development and validation. His research interest includes thrombosis and haemostasis, patient reported outcomes, systematic review and meta-analysis and data analysis. PubMed Publications

• Randall G. Curtis MBA

  Project Manager, Factor VIII Computing, Berkeley, CA
  Randall Curtis has a bachelor of science in genetics and an MBA in computer information systems. He is also a certified Project Management Professional (PMP) by the Project Management Institute and a Microsoft Certified Systems Engineer. Throughout his 33 year career with the State of California in Public Health and Industrial Relations, he as always worked on data collection systems for hemophilia in his spare time. Mr. Curtis has served as the IT Operations Manager for a 1,300 person California Public Health Laboratory, and the Chief Information Security Officer and subsequently as the Chief Enterprise Architect for a labor department of 6,000 employees. Now that he is retired, he devotes his time to collecting data on the Hemophilia Utilization Group Studies (HUGS), the Patient Reported Outcomes, Burdens and Experiences (PROBE) study and the Cost of Hemophilia Socioeconomic Survey (CHESS) projects. Mr. Curtis also serves on several non-profit boards of directors including the Center for Inherited Bleeding Disorders and the Hemophilia Council of California. His policy work includes the American Thrombosis & Hemostasis Network (ATHN) Privacy, Security and Data Access Committee, the National Hemophilia Program Coordinating Center (NHPCC) Advisory Committee, the National Hemophilia Foundation Annual Meeting Planning Committee and the Pacific Sickle Cell Regional Collaborative Policy Working Group. PubMed Publications

• Neil Frick MS

  Vice President for Medical Information, National Hemophilia Foundation, New York, NY
  Neil Frick has a Master of Science, 1993, St. John’s University, Jamaica, NY, Rehabilitation Counseling. He is responsible for the overall strategic and operational leadership of the National Hemophilia Foundation’s (NHF) research programs and HANDI Information Resource Center including oversight of the processes of material development, update and distribution channels. Supervise the awarding of NHF research grants and clinical fellowships. Neil supports the work of NHF’s Medical and Scientific Advisory Council and supervise NHF’s continuing education program serving coagulation disorders treatment professionals. This includes the development of healthcare provider publications, pre-conference symposium and medical program tracks at NHF’s Annual Meeting. PubMed Publications

• Alfonso Iorio MD PhD FRCPC

  Professor and Chair, Department of Health Research Methods, Evidence, and Impact (formerly Clinical Epidemiology and Biostatistics), McMaster University, Canada
  Dr Iorio is an Associate Professor of Clinical Epidemiology & Biostatistics and Medicine at McMaster University. He is the Director of the Health Information Research Unit and Director of the Hemophilia Clinic, Hamilton Health Sciences, McMaster Site. His main research interests are in targeting research results to individual specificities, knowledge translation, risk stratification and usage of individual patient data databases.  In the field of knowledge translation, his specific interest is in communication of research results to the lay public, including shared decision making. He is the principal investigator of many multicentre initiatives including: CHESS (Canadian Hemophilia Surveillance Scheme); the Canadian “branch” of the EUHASS surveillance scheme for adverse effects of hemophilia treatment; CBDR (Canadian Bleeding Disorders Registry), the new clinical management software for the network of hemophilia clinics in Canada; WAPPS-Hemo (Web-based Application for the Population Pharmacokinetic Service for Hemophilia) a web-based solution for simplified estimation of individual factor concentrate pharmacokinetics and recently the WBDR (World Bleeding Disorder Registry), a new tool that collects patient data from Hemophilia Treatment Centres (HTCs) worldwide, with technical support from the Health Information Research Unit. Dr Iorio is an Associate Editor for the blood coagulation disorders of the Cystic Fibrosis and Genetic Disorders Review Group of the Cochrane Collaboration, Associate Editor to the journal Thrombosis Research and Chair of the Data and Demographics Committee of the World Federation of Hemophilia (WFH) and as well he works closely with many other international organizations in the field of hemophilia. He is a world renowned leader in the field of hemophilia. PubMed Publications

• Michael B. Nichol PhD.

  Vice Dean for Faculty Affairs, University of Southern California’s Sol Price School of Public Policy, CA
  Dr. Nichol serves as Professor of Health Policy at the University of Southern California’s Sol Price School of Public Policy. In addition, he is Price’s Vice Dean for Faculty Affairs and directs the school’s Graduate Health Programs. These programs include the Master in Health Administration and the Executive Master in Health Administration. Dr. Nichol is also a Research Fellow at the Leonard D. Schaeffer Center for Health Policy and Economics. He has published extensively in peer-reviewed academic journals, and he maintains an active research grant profile with significant funding of projects in hemophilia and blood disorders. Professor Nichol’s research program also focuses on cost-effectiveness in health care programs and products, including medical devices and pharmaceuticals. Prior to his academic career, he worked in regional and state level health policy organizations. PubMed Publications

• Declan Noone

  The President of the European Haemophilia Consortium, Dublin, Ireland
  Declan Noone is the President of the European Haemophilia Consortium (EHC). He was elected in 2019. Declan has extensive experience as a patient advocate at the national, European and international levels. He worked with the Irish Haemophilia Society (IHS) as Data and Public Policy Specialist for eight years. His primary responsibilities included membership in the national tender board to purchase products for the treatment of haemophilia and other related conditions. He also worked on access to treatments for hepatitis C. Before being elected President, he worked with the EHC as a Project Consultant on the PARTNERS Programme, an initiative to raise access to treatment in countries with low treatment standards. During his time with EHC, he also coordinated projects on data collection and novel therapies. PubMed Publications

• Brian O'Mahony

  Chief Executive of the Irish Haemophilia Society, Dublin, Ireland
  Brian O’Mahony is the Chief Executive of the Irish Haemophilia Society and the President of the European Haemophilia Consortium. He represents the society on the statutory National Haemophilia Council and he is the Vice Chair of the Tender Commission established by the Irish Government for the Procurement of Factor Concentrates. He is a member of the Board of the Irish Blood Transfusion Service and of the Irish Government vCJD incident panel. He previously served as Chair of the Irish Haemophilia Society for 17 years and as President of the WFH for 10 years from 1994 to 2004. A medical scientist by profession, he is a Fellow of the Institute of Biomedical Sciences (UK) and a Fellow of the Academy of Clinical Science and Laboratory Medicine (Ireland) He has post Graduate qualifications in Management and in Occupational Health and Safety and is currently an assistant adjunct Professor in Health Service Management in Trinity College, Dublin. Brian O’Mahony has severe Haemophilia B. PubMed Publications

• David Page

  National Executive Director, Canadian Hemophilia Society, Canada
  David Page is currently National Executive Director of the Canadian Hemophilia Society (CHS). He served as a volunteer with the CHS from 1982 to 2001, including a 2-year term as President in the 1990s. In 2001, he left the field of teaching and educational publishing to take a staff position with the CHS. Before becoming Executive Director in 2006, he held the positions of Director of Programs and Blood Safety Coordinator. David served on the Quebec Hemovigilance Committee advising the Minister of Health on blood safety issues from 1998 to 2006, including four years as president. He has been a member of the Héma-Québec (Quebec’s blood establishment) Safety Committee since 1999. David served on the Executive Committee of the World Federation of Hemophilia from 2000 to 2008 and is chair of its Therapeutic Products Safety, Supply and Availability Committee. David has severe factor IX deficiency. PubMed Publications

Jeffrey S. Stonebraker PhD.

North Carolina State University’s Poole College of Management
Jeffrey S. Stonebraker is an associate professor at North Carolina State University’s Poole College of Management with research and teaching interests in decision analysis and forecasting long-range global demand for hemophilia and other rare diseases. Prior to this, he was a decision analyst with Bayer Biological Products and GlaxoSmithKline. Jeff is a retired US Air Force officer, including two tours of duty teaching math and operations research at the US Air Force Academy. He serves on the Data and Demographics Committee of the World Federation of Haemophilia and is a co-investigator in the Patient Reported Outcomes Burdens and Experiences (PROBE) study. Jeff received a PhD in management science from Arizona State, a MS in engineering-economic systems from Stanford, and a BS in electrical engineering from the University of South Florida. Jeff is a member of the Institute for Operations Research and the Management Sciences and its Decision Analysis Society, and is a fellow of the Society for Decision Professionals. PubMed Publications