ArthritisPower® Preliminary Results to Be Presented at Annual European Congress of Rheumatology (EULAR 2016) in London

UPPER NYACK, N.Y.–(BUSINESS WIRE)– CreakyJoints®,
the go-to source for more than 100,000 arthritis patients and their
families world-wide who are seeking education, support, advocacy and
patient-centered research, today announces that preliminary results
stemming from the development and launch of the ArthritisPower®
research registry will be presented at the Annual European Congress
of Rheumatology (EULAR 2016) in London. Specifically, at the People
with Arthritis and Rheumatism in Europe (PARE) sub-meeting on June 10,
an oral presentation will report findings from a study titled,
“Rheumatoid Arthritis Patient Characteristics and Willingness to
Participate in Research Among Members of the CreakyJoints Arthritis
Patient Community: Results from a Patient Survey.” Also on June 10, a
poster in the Education category titled, “Patients’ Prioritization of
Patient-Centered Education and Research Topics in Rheumatic Disease,”
will be presented.

“At its core, patient-centered care brings together patient and
physician perspectives when developing treatment strategies.
Historically, the rheumatology patient community has not had measurable
and actionable means to help determine what researchers investigate to
better understand arthritis. Now we do,” said W. Benjamin Nowell, Ph.D.,
Director of Patient-Centered Research at CreakyJoints and lead author of
both studies. He is also a Principal Investigator of ArthritisPower. “As
demonstrated by these studies, people living with arthritis are willing
to participate in research and have concrete ideas about the questions
that need to be answered in order for them to make informed and
personalized healthcare decisions with their doctor.”

Arthritis Community Open to Research Participation

In collaboration with the University of Alabama at Birmingham, and
supported by the Patient Centered Outcomes Research Institute (PCORI),
CreakyJoints created ArthritisPower, the first ever patient-led,
patient-centered research registry for arthritis. As part of its
development, CreakyJoints surveyed its membership to better understand
how arthritis patients prefer to learn about research opportunities, who
they most trust to invite their participation in studies, and their
level of interest in study participation. As described in the PARE
presentation, results show that while most patients, 93 percent, have
never participated in arthritis research, they would be interested in
participating, particularly if the opportunity was presented by their
own doctor.

A sample of 970 registered CreakyJoints members who identified as
rheumatoid arthritis patients completed a survey on willingness to
participate in research in 2014-2015. Most patients (68 percent) had
never taken part in research, yet nearly all respondents (93 percent)
would be somewhat (27 percent) or very interested (66 percent) in
research participation if they were invited by their physician.
Similarly, patients would be willing to participate if they were invited
by a medical school/hospital (87 percent), non-profit organization (79
percent), or the government (73 percent). More than half of all
respondents expressed interest in working with a drug company (63
percent), but there was somewhat lower interest in working with a
private company (50 percent) or insurance company (46 percent).

Prioritizing Research Topics

In a separate study aiming to better understand the arthritis
community’s research priorities, CreakyJoints members were asked to
identify and rank their most pressing education and research concerns.
As reported in the poster presentation, among the individual items rated
as “Extremely Important” by a majority of patients were: How arthritis
affects more than just your joints (86 percent), What are the signs that
the medication is not working (84 percent), Importance of knowing about
how the disease will progress even if the news is bad (83 percent),
among others.

The two-phase study included virtual focus groups followed by on online
survey. In the first phase 47 CreakyJoints members participated in six
nominal groups held in June and July, 2015. Each group generated a set
of education topics in their own words and then rank-ordered their
relative importance. Based on this qualitative work, a survey was
created and, in the second phase, deployed more widely to the
CreakyJoints membership. Items on the survey were topics expressed by
patients in the nominal groups. Among the 400 survey participants, the
mean (SD) age was 55 (11.5) years with 86 percent women and 82 percent
white. Participant health conditions included a range of rheumatologic
conditions (not mutually exclusive): rheumatoid arthritis (74 percent),
osteoarthritis (45 percent), fibromyalgia (26 percent), osteoporosis (18
percent), psoriatic arthritis (8 percent), lupus (5 percent) and
ankylosing spondylitis (5 percent).

“Understanding the education needs of patients will allow us to better
influence future research, particularly as we engage with institutions
and scientists interested in working with ArthritisPower infrastructure
and data,” said Jeffrey Curtis, MD, MS, MPH, William J. Koopman Endowed
Professor in Rheumatology and Immunology at the University of Alabama at
Birmingham, Division of Clinical Immunology and Rheumatology, a
Principal Investigator of ArthritisPower and a study co-author.
“Certainly, identifying and studying new treatment options should remain
a key component of scientific engagement, but this study reiterates that
quality of life measures as well as concerns about disease progression
and treatment are high priority topics for the arthritis community.”

About ArthritisPower

Created by CreakyJoints
in collaboration with the University of Alabama at Birmingham, and
supported by a multi-year, multi-million dollar investment by the
Patient Centered Outcomes Research Institute (PCORI), ArthritisPower
is the first ever patient-led, patient-centered research registry for
arthritis, bone, and inflammatory skin conditions. ArthritisPower is
part of PCORnet, the National Patient-Centered Clinical Research
Network, a large, highly representative, national network for conducting
clinical outcomes research.

The ArthritisPower mobile and desktop application allows patients to
track, measure, and share their symptoms and treatments outcomes while
simultaneously participating in arthritis research via informed consent.
ArthritisPower Patient Governors serve as gatekeepers for researchers
seeking to access registry data or solicit the community to participate
in unique, voluntary studies. Patient Governors also help to prioritize
research requests and will help to disseminate research findings to
members of CreakyJoints, the go-to source for more than 100,000
arthritis patients and their families world-wide who are seeking
education, support, advocacy and patient-centered research. To learn
more about the ArthritisPower Research Network, visit www.ArthritisPower.org

About CreakyJoints

CreakyJoints®,
now in its 17^th year, has evolved into the go-to source for
more than 100,000 arthritis patients and their families world-wide who
are seeking education, support, advocacy and patient-centered research.
Co-founded in 1999 by arthritis patient Seth Ginsberg and social
entrepreneur Louis Tharp, CreakyJoints is part of the Global
Healthy Living Foundation, www.ghlf.org
whose mission is to improve the quality of life for people with chronic
illness. For more information and to become a member (for free), visit www.CreakyJoints.org.

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