The advantages of a virtual RMD
conference for patients
Avirtual conference organised by ReumaNet in Brussels reached far more patients than did its traditional physical conference,
broadened ReumaNet’s social media
visibility, and raised patient awareness
of rheumatic and musculoskeletal
diseases (RMDs) on a broader scale,
according to a
presentation at
the Congress
that described
the event and its
impact.
“If we want
to reach a lot
of patients, we
should use more
digital solutions
to do so, such as a virtual conference, ”
said presenter Mitchell Silva, PhD, M-Health coordinator at ReumaNet.
ReumaNet hosted the virtual conference in place of its biennial physical
conference for patients that addresses
various RMD topics. About 200 people
generally attend the traditional event.
For the virtual conference, ReumaNet
created an online system that included
more than 20 prerecorded presenta-
tions on subjects such as the medical
evolution of RMDs; the psychological,
“virtual booths” that enabled them to
provide educational material in PDFs
or video formats.
More than 1,300 people registered
for the virtual event and more than
140,000 people were reached on
social media, according to ReumaNet. On the platform itself, the
content received more than 5,000
video views and the virtual booths
received more than 3,000 visits.
In addition, the virtual conference
achieved high patient satisfaction
rates and also raised the visibility of
ReumaNet’s Facebook page.
The fact that the virtual conference
was a temporary event, meaning
it had a start and end date, gave a
sense of urgency to visit the event
online, Dr. Silva said.
“After the end date, the content
was taken offline,” he noted. “Having
credible information, prescreened and
validated, in one place was a big asset
for visitors. A similar approach will be
repeated this year, however, with a
simple website that does not require
preregistration in contrast to the tech-
nology that was used in this pilot.”
“This concept can be repeated by
other patient organisations across
Europe and serve as an inspiration, ”
he said. “By using this approach, high-
quality educational content can be pro-
vided to anyone who has an interest
in learning more on a variety of topics.
Even more interesting, you will learn
more about the profiles of the patients
who have an interest in such educa-
tional content. ReumaNet is open to
share this concept with other patient
organisations in Europe.”
Dr. Silva
“This concept can be
repeated by other patient
organisations across Europe
and serve as an inspiration.”
changed 1-3 months after the last denosumab injection and then regularly
afterward, how bone mineral density
changed after 1 year, and any new
osteoporotic fractures.
At the time of denosumab discontinuation, 59% received zoledronate,
24% alendronate, 3% other drugs,
and 14% nothing. At a mean of about
17 months after the last denosumab
injection, the investigators classified
30 patients as BMD losers (losing
at least 3.96%), and 41 had stable
BMD. The researchers found that
BMD losers were younger (61.4
years vs. 65.5 years), were less likely
to use zoledronate before starting
denosumab (0% vs. 12%), and had
greater serum CTX (C-telopeptide
cross-linked type 1 collagen) levels
at denosumab initiation (644 ng/mL
vs. 474 ng/mL) and 12. 8 months after
stopping denosumab (592 ng/mL
vs. 336 ng/mL) than did those with
stable BMD. All differences were statistically significant.
“Our results support the use of
denosumab in second line after
bisphosphonate therapy to restrain
the BMD loss at its discontinuation ...
and a strategy to maintain the bone
turnover marker serum CTX as low as
possible after denosumab discontinuation,” she concluded.
“Our proposition is to start with 1
or 2 years of bisphosphonates, and if
the osteoporosis is severe, to switch
to denosumab treatment for 4, 6
years. … We can use denosumab for
10 years without side effects, and
after that we give bisphosphonates to
consolidate the treatment,” she said.
Dr. Rozier Aubry and her associates
plan to follow patients in their study
for 2 years. She disclosed serving on
speakers bureaus for Eli Lilly, Pfizer,
Amgen, and Novartis.
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