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tients in the bleeding disorders community and how to share
the results so that, for example:
S Doctors can determine which medication is most effective
to treat different kinds of bleeding disorders.
S Patients can decide whether, with a variety of treatment
products available, they should consider making a change.
S Insurers can resolve the question of whether regularly
scheduled use of factor to prevent a bleed is better than
treating a bleed when it happens.
HFA’s PRIDE Project wants you to be directly
involved in PCOR and CER research efforts. We
will train you to participate in PCOR and CER,
and get you involved by introducing you to PCOR
and CER researchers at universities, hospitals, in-
stitutes, insurance companies, biopharmaceutical manufactur-
ers, and others who undertake PCOR and CER. We want you to
work with these researchers so you can answer these questions:
S W hat are my options and what are the potential benefits
and risks of those options?
S What can I do to improve the outcomes that are most
important to me?
FACTOR REPLACEMENT REFLECTS THE
PROTECTION WITHIN
References: 1. Peyvandi F, Garagiola I, Young G. The past and future
of haemophilia: diagnosis, treatments, and its complications. Lancet.
2016;388:187-197. 2. Wolberg AS. Plasma and cellular contributions
to fibrin network formation, structure and stability. Haemophilia.
2010;16(suppl 3):7-12. 3. King MW. Introduction to blood coagulation.
http://themedicalbiochemistrypage.org/blood-coagulation.php. Last
modified January 2, 2017. Accessed November 21, 2016.
©2017 Shire US Inc., Lexington, MA 02421.
All rights reserved. 1-800-828-2088.
Shire and the Shire Logo are registered trademarks of
Shire Pharmaceutical Holdings Ireland Limited or its affiliates. S28150 01/17
12 HEMP16CDRCaHte0l7i3n7e_JFAe_d7e_r5ax4ti_o6n25|_FJUalNlE2.0in1d7d 1
S Given my personal characteristics, conditions, and
preferences, what should I expect will happen to me?
S H ow can clinicians and the care delivery systems they work
in help me make the best decisions about my health and
health care?
HFA will offer training in PCOR and CER for the next couple
of years through online webinars and town hall meetings and
at in-person meetings like our TEACH Immersions, Sympo-
sium, and local Member Organizations meetings. To learn
more about PCOR and CER, watch our online webinar entitled
“Research 101” located in the Resource Library of our website
and look for announcements about PRIDE Project events like
additional webinars and online and in-person learning oppor-
tunities.
If you have a research question you think HFA should
investigate with your help and the help of others, or you have
any questions for our Research Team, please email us at
research@hemophiliafed.org. n n
ii US Food and Drug Administration
ii h ttp://effectivehealthcare.ahrq.gov/index.cfm/
what-is-comparative-effectiveness-research1/
iii Patient Centered Outcomes Research Institute (PCORI)
For people with hemophilia, Factor treatment temporarily
replaces what’s missing.1 With a long track record of proven
results, Factor treatment works with your body’s natural
blood clotting process to form a proper clot.2,3
Brought to you by Shire, dedicated to pursuing advancements
in hemophilia for more than 60 years.
Stay empowered by the possibilities.
5/8/17 7:05 AM