Investigators

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      • 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

 

    • 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

 

    • 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

 

    • 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

 

    • Baiba M. Ziemele

      President of Latvia Hemophilia Society, Chairwoman (Board) of Latvian Network of Patient Organizations, Riga, Latvia
      Baiba Ziemele is a passionate patient advocate from Latvia. Living with inherited bleeding disorder, von Willebrand disease, she has been heavily involved in patient advocacy, becoming president of Latvia Hemophilia Society in 2009, representing European community with bleeding disorders as ePAG in EuroBloodNet, European Reference Network for rare hematological diseases (2019-2024), engaging in various committees at European Haemophilia Consortium and World Federation of Hemophilia. She has helped shaping rare disease policy nationally and internationally. Since 2018, Baiba is also building Latvian Network of Patient Organizations to bring united patient voice and represent patient interests at various tables. In 2022, Baiba received Human Development award for outstanding contribution to health from Civic Alliance Latvia and US Embassy in Latvia and was awarded Person of the Year 2023 in Medicine by Latvian Medical Association. Magazine “Pastaiga” announced her one of most influential women in Latvia in 2024. Orcid Publications

 

    • Dawn Rotellini

      Chief Operating Officer, National Bleeding Disorders Foundation, WFH Board of Directors, New York, USA
      Dawn Rotellini has been a leader in the bleeding disorders community for 26 years.  As a parent of a son with Hemophilia, she founded the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana, USA, and served as its Executive Director.  After moving to Pittsburgh, Pennsylvania, she served as a board member for the Hemophilia Center of Western Pennsylvania for six years and then as Executive Director of the Western Pennsylvania Chapter.  Dawn then worked in the biopharmaceutical industry at Bayer Healthcare.  She has been with the National Bleeding Disorders Foundation (formerly the National Hemophilia Foundation) for 16 years and serves as the Chief Operating Officer.  Dawn also serves on the Board of Directors for the World Federation of Hemophilia and World Federation of Hemophilia USA.  She chairs the Women and Girls with Inherited Bleeding Disorders Committee and the Hemophilia Organization Twinning Committee.  She holds a Bachelor of Science degree in Political Science from Montana State University.

 

    • Matthew Delayne

      Government Relations Manager at the National Bleeding Disorders Foundation, New York, USA
      Matt is the Government Relations Manager at the National Bleeding Disorders Foundation, focusing on state and federal healthcare policy. Born with a vonWillebrand’s disease and a platelet disorder, Matt has navigated life with a bleeding disorder and uses his experience to inform NBDF’s public policy agenda. Prior to joining NBDF, Matt served as a Legislative Aide in the New York State Senate and in behavioral health policy for New York State. Within his role at NBDF, Matt has coordinated NBDF’s leadership of the American Plasma Users Coalition (APLUS) focusing on blood and plasma safety and supply, and was a member of the CoreVWD study, reporting on patient outcomes important for those living with vonWillebrand’s Disease. A lifelong resident of Upstate New York, Matt enjoys hiking and biking in the Adirondacks, volunteering as a camp counselor at Double H Ranch, a camp for children with chronic and life threating illnesses, and playing bass guitar. Matt is also completing his Masters in Public Administration at the Rockefeller School of Government Affairs in Albany, New York.

 

    • Federico Germini MD PhD

      Assistant Professor, Department of Biomedical Sciences, Humanitas University Center for Clinical Research and Epidemiology, Milan, Italia
      Dr Germini is a clinical researcher and a physician. He is currently an assistant professor at Humanitas University and a part-time assistant professor at McMaster University. Dr. Germini’s research interests include the use of routinely collected data for clinical research, clinical trials, patient reported outcomes, systematic reviews, and guidelines. His clinical research focuses are bleeding disorders and venous thromboembolism. Federico is also co-principal investigator of the American College of Physicians (ACP) Review Center at Humanitas Research Centre and co-lead of the Grading of Recommendations, Assessment, Development, and Evaluations (GRADE) working group on rare diseases. His research is supported by the Canadian Venous Thromboembolism Research Network (CanVECTOR), the Society to Improve Diagnosis in Medicine (SIDM), the Physicians’ Services Incorporated (PSI) Foundation, the Canadian Association of Emergency Physicians (CAEP), McMaster University, and Hamilton Health Sciences. PubMed or ORCID Publications

 

    • Naja Skouw-Rasmussen

      Long-standing community volunteer with the Danish Haemophilia Society and European Haemophilia Consortium
      Naja Skouw-Rasmussen has a long-standing involvement in the bleeding disorder community with ten years of experience on the board of directors at the Danish Haemophilia Society (DHS). She served as member of the European Haemophilia Consortium (EHC) Steering Committee from 2016-2021 and was founding member and Chair of the EHC Women and Bleeding Disorder Committee from 2017-2021. She represented patients in the European Association For Haemophilia And Allied Disorders Working group on women and girls with bleeding disorders from 2019-2024.
      Ms. Skouw-Rasmussen holds a Master of Science in Geography from the University of Copenhagen and a Master of Science in Development Studies from SOAS in London. She has worked at the Danish National Council of Volunteering and as a consultant for the EHC Think Tank. Ms. Skouw-Rasmussen currently works as a digital consultant at the Centre for IT and Medico technology in the Capital Region in Denmark. ORCID Publication

 

The PROBE team is made up of dedicated professionals who provide critical support to both the study and its investigators. They ensure the highest standards in data managements, analysis, and operations, helping to advance patient-reported outcomes research with accuracy and care.

 

Sasha (Alexandra) Kucher

Senior Research Data Manager, Patient Outcome Research Group Ltd., Washington DC, USA.

Sasha Kucher is a Senior Research Data Manager with extensive experience leading international patient-reported outcomes research. Since 2016, she has managed the PROBE (Patient Reported Outcomes, Burdens and Experiences) study, a global quality-of-life study for people with hemophilia. In this role, Sasha oversees project management, UX research and design, data analysis, and visualization reports across more than 80 countries, collaborating with researchers, clinicians, and patient organizations worldwide. With a background in economics, mathematics, and data management, Sasha brings expertise in quantitative and qualitative analysis, survey design, and cross-cultural communications. Sasha is passionate about using data-driven insights to improve health outcomes and access to care. ORCID Publication

 

Elizabeth Clearfield

Senior Research Manager, Institute for Policy Advancement, Ltd, Washington DC, USA.

Elizabeth Clearfield is a Senior Research Manager focused on patient-centered outcomes research. She specializes in study design and methodology for projects aiming to improve comparative effectiveness research and elevate the patient voice through patient- and multi-stakeholder engagement. Elizabeth has led a number of consensus projects utilizing the Delphi method. She previously worked at the Center for Medical Technology Policy (CMTP) where she was the key methodologist in innovating methods and implementing the core outcome set development program. She served as project lead on several core outcome set projects, including coreHEM and coreVWD, and is part of the PROBE Study. ORCID Publication

 

Fiona Brennan

Senior Engagement Manager, Institute for Policy Advancement, Ltd, Washington DC, USA.

Fiona joined the PROBE Team in April 2024 as Senior Engagement Manager, bringing a wealth of experience in patient engagement and community-driven initiatives. Based in Ireland, she previously served as a patient engagement expert at the European Haemophilia Consortium (EHC), where she managed key programmes including Community Advisory Boards, Youth Leadership, and Organisational Health initiatives. Known for her expertise in fostering collaboration and resolving conflicts among stakeholders, Fiona also spent eight years with the Irish Haemophilia Society. She holds a Degree and Master’s in Psychology from Trinity College Dublin and is currently pursuing a PhD in Psychotraumatology.