ASH News Daily 2017 - Issue 3 - C-3

ASH News Daily

Monday, December 11, 2017

Page C-3
®

ASH Makes Progress on Providing a Data Resource
for Hematologists

he need to facilitate the sharing of research-grade data for
ASH members and the hematology community is something
that ASH has championed for quite
some time. This year in Atlanta,
ASH is excited to offer some updates and additional information
on the progress in developing its
own data registry, moving from a
strategic vision toward a practical
data-resource.
Because medicine generates
massive amounts of information
that could improve clinical care
and shed new light on disease
mechanisms, professional society-driven registries, designed
around the needs of their specialty
and their membership, are now being developed. To date, there is no
centralized effort addressing the
landscape of malignant and nonmalignant hematologic diseases.
Research-focused registries offer
collaborative knowledge-sharing
solutions that provide a single
point of access that is suited to
the unique needs of rare diseases.
A goal is to enable researchers
around the globe to more quickly and accurately answer critical
questions, from disease prevalence
to key sociodemographic information, and to allow investigators to
test and validate research hypotheses, through harnessing the power
of big data.
For the initial focus of the registry, sickle cell disease (SCD) and
multiple myeloma were selected
based on existing scientific priorities as well as ongoing activities
related to ASH's scientific research
agenda. For SCD, there is a gap in
longitudinal research resources,
which creates a need for a resource
to track patients from birth through
adulthood. For multiple myeloma,
there are several approved agents
and therapeutics under development that would benefit from longitudinal study. The data housed
by the ASH registry is anticipated

to be of enormous interest to ASH
members, and as it expands and
matures over time, the Society recognizes additional opportunities to
benefit other audiences.
The registry is currently engaged
in early development activities
and is focused on building the core
structure necessary to support a research tool of this magnitude. As
we progress, we are eager to hear
from ASH members and others
who are interested in registry activities and who would like to volunteer their expertise to assist with

Come see our
360-degree vision for
data-driven research
and global collaboration in the lobby
outside of Hall C in the
Georgia World
Congress Center.
ongoing efforts. We are looking for
individuals with expertise in key
areas, including data science and
health information technology.

One of ASH's unique resources is
its one-of-a-kind global community
that brings content expertise to the
study and management of hematologic diseases, and nowhere is this
more clear than here at the annual
meeting. Come see our 360-degree
vision for data-driven research and
global collaboration in the lobby
outside of Hall C in the Georgia
World Congress Center.
If you are interested in finding
out more about volunteer opportunities for the registry, please contact
us at registry@hematology.org.

ASH is committed to conquering sickle cell
disease (SCD). Learn about the steps we
are taking to improve
Access to Care * Global Issues * Research * Policy

Selfie Zone
Take a photo in the ASH Selfie Zone, located in ASH Central (Building B, Level 1, Hall
B1), to capture the excitement
of the annual meeting with
your friends and colleagues.
There will be various props
and backdrops available for
your use.

Visit the SCD Kiosk located in the
lobby in front of Hall C2.

American Society of Hematology

ASH AND 2017 SCD ad FULL 10x14.indd 2

11/6/17 10:25 AM

Table of Contents for the Digital Edition of ASH News Daily 2017 - Issue 3