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Get Counted: The Importance of Registries

Friday, June 25 | 4:00 PM – 5:00 pm ET

Zoom Webinar

Registries are a critical way for researchers to monitor safety signals and other trends, learn from the patient experience and to predict future needs or concerns. Hear from a group of leaders from across bleeding disorders organizations in how registries or surveys inform the medical and scientific advances for our community and how your participation makes a difference.

Moderator

Eric Iglewski, LMSW

Eric Iglewski, LMSW has worked as a licensed social worker for about 25 years. He earned his Master of Social Work from Boston College and has specialized clinical experience in trauma, loss and group work. He is honored to have served people and families impacted by bleeding disorders at the Mary M. Gooley Hemophilia Center since 2010. He provides a wide range of services to the bleeding disorders community, including individual counseling, advocacy and supportive-educational programming to groups and families. Eric has enjoyed working on many national committees and is a former chairperson of the National Hemophilia Foundation Social Work Working Group. His HTC actively participates in the World Federation of Hemophilia Twinning program – he has worked closely with providers and consumer organizations in both Kyrgyzstan and Nepal over the last several years.

Panel

HFA – Mabel Crescioni, DrPH, JD, LLM

Dr. Mabel Crescioni leads all patient- centered research initiatives as the Director of Public Health and Outcomes Projects at the Hemophilia Federation of America (HFA). She is also Professor of Practice and Instructor at the University of Arizona (UA), Mel & Enid Zuckerman College of Public Health and the James Rogers College of Law, where she teaches “Public Health Policy and Management” and “Clinical Research Ethics” respectively. Mabel is currently a member of the Research and Clinical Trials Working Group of the Black Women’s Health Imperative Rare Disease Diversity Coalition. Mabel has also served as a public health and evaluation consultant to state and tribal health departments, federally qualified health centers, public health institutes and other non-profit organizations.

Prior to joining HFA, Mabel was Director, Electronic Patient-Reported Outcome (ePRO) Consortium and Assistant Director, Patient-Reported Outcome (PRO) Consortium at Critical Path Institute (C-Path). Following a graduate internship at the Centers for Disease Control, National Center for Health Statistics and a post-doctoral fellowship at the UA College of Medicine (UA-CoM) where she focused on analyzing epidemiologic data and validating survey instruments, Mabel joined the UA-CoM faculty as Assistant Research Professor where she worked on a longitudinal study of refractive error among Native American children validating PRO measures. 

After attending Rutgers University, Mabel earned a Jurid Doctor at Interamerican University of Puerto Rico, a Master of Laws (LLM) in Health Care Law at Saint Louis University School of Law, and a Doctor of Public Health (DrPH) at the UA, Mel & Enid Zuckerman College of Public Health. Prior to joining the UA, she also served as Health Policy Advisor to the Governor of Puerto Rico and Legislative Assistant in the Puerto Rico Senate.

NHF – Michelle Witkop, DNP

As the Head of Research, Dr. Witkop, a Doctor of Nursing Practice, leads the National Hemophilia Foundation’s research initiatives. Previously the lead practitioner at the Northern Regional Bleeding Disorders Center in Traverse City MI, she is the 2015 recipient of the Nurse of the Year Award from the American Nurse Credentialing Center (ANCC) for Transformational Leadership, the past Chair of NHF’s Nursing Work Group and the 2014/2015 Co-Chair of NHF’s Annual Meeting. As well as being a charter member of the American Thrombosis & Hemostasis Network’s (ATHN) National Hemophilia Program Coordination Center (NHPCC) Advisory Committee, Dr. Witkop is an ATHN/HRSA Demonstration Project of National Significance Grantee with the project, “Evaluating a Nurse Practitioner Medically Lead Hemophilia Treatment Center in Comparison to a Physician Medically Lead Hemophilia Treatment Center”.

Dr. Witkop’s background includes extensive experience and research in pain management including chronic pain and palliative care. Prior to joining the bleeding disorders community, Dr. Witkop was employed in a chronic pain practice and was Board Certified in Hospice & Palliative Care. She has been either the principal investigator or co-investigator for multiple hemophilia pain research studies including the National Pain Study and the IMPACT Quality of Life Studies. She has published multiple articles as well as lectured extensively. She is the immediate past-chair of the MASAC Pain Initiative Subcommittee.

PNS – Julie Birkofer

Julie Birkofer has 30 plus years of government relations and policy experience primarily focusing on the health care industry. Her areas of expertise include coalition building, strategic planning, Medicare reimbursement, public affairs, issue analysis, and grassroots networking. Ms. Birkofer assumed the leadership role as head of the North American division in October 2004.

The North America division is responsible for federal and state affairs, stakeholder relations, as well as communications within the United States. Among her accomplishments, Ms. Birkofer was awarded the “Unsung Hero” Award from the Hemophilia Association of New Jersey. Ms. Birkofer also received an Advocacy Award from the Alpha-1 Foundation.

Ms. Birkofer has been promoted several times during her tenure at PPTA and currently holds the position of Senior Vice President, Public Affairs. In this role, she is the liaison to the North America Board of Directors, coordinates the federal and state health policy activities of the Association, administers the North America programs – notably the Patient Notification System and has the distinct pleasure of coordinating outreach to patient organizations.

Prior to joining PPTA in 2001, as the Director of Health Policy she served in the office of former Pennsylvania Gov. Tom Ridge as the Associate Director of Domestic and Health Policy. Ms. Birkofer also served as a sworn member of the U.S. Department of Health and Human Services (HHS) Advisory Committee on Blood Safety and Availability.

Ms. Birkofer was Senior Government Affairs Representative at Highmark, Inc., and focused on major health insurance issues such as the Patients’ Bill of Rights and Medicare prescription drug coverage. In addition, she served as a Vice President at R. Duffy Wall & Associates, Inc., a government relations consulting firm. She also served the Senior Congressional Representative for the 20,000 member American Chiropractic Association. Early in her career, Ms. Birkofer was a Policy Analyst at the American Medical Peer Review Association, where she developed her Medicare policy skills.


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