Overview of RegistryNXT!
A multi-year, multi-Registry technology and design
initiative, called Registry NXT!, is underway to redesign
the data collection technologies and data reporting
systems that underlie the Lysosomal Storage Disease
(LSD) Registries.
For More Information
United States & Other Non-European Countries
Gaucher Registry
This new, entirely web-based, platform presents an opportunity
to redefine the chronic and rare disease Registry experience
for health care providers, patients, and researchers.
Genzyme Corporation
500 Kendall Street
Cambridge, MA 02142 USA 800-745-4447, x15500 617-591-5500
The RegistryNXT! Platform
• Standardized Registry model across all 4 LSD Registries
• Integrated data entry system and data reporting website
• Single sign-on for data entry and reporting
• More flexible and efficient data collection
• Interactive, real-time reports for disease management
Europe
Gaucher Registry
Genzyme Europe BV
Gooimeer 10
1411 DD Naarden
The Netherlands
RegistryNXT! Roll Out
2011
Gaucher
Registry
Rollover
+31-35-699-1232
2012
2013
2014
Pompe
Registry
Rollover
Fabry
Registry
Rollover
MPSI
Registry
Rollover
The ICGG
Gaucher Registry
&
REGISTRY NXT
Latin America
Gaucher Registry
Genzyme do Brasil Ltda.
Praça Floriano, 19 - 26° Andar - Centro
20031-050 Rio de Janeiro - RJ
+55 (21) 2156-9989
Each of the LSD Registries will transition to the
new RegistryNXT! platform.
www.gaucherregistry.com
All Registry sites will receive RegistryNXT! training,
with options for webinars, e-learning and
one-on-one sessions with Registry Staff.
REGI-GL-P012-09-10
© 2010 Genzyme Corporation. All rights reserved
www.gaucherregistry.com
Increasing
Knowledge
Improving
Outcomes
Why Participate in the ICGG Gaucher Registry?
New Reports for Disease Management & Research
New Data Entry With Single Sign On
• The largest cooperative, observational longitudinal
Registry on Gaucher disease, with more than 40,000 years of patient data.
• Established
in 1991, tracking outcomes of routine
clinical practice for approximately 6000 patients
enrolled from over 60 countries.
“Real Time” Data Interchange
• All
Gaucher Type 1, 2, & 3 patients can be enrolled
regardless of treatment status or product, allowing
research on both treated and untreated patients.
• Worldwide
participation and research activity, with
scientific oversight and direction from independent board of physician experts.
Disease
Management
• Over
Answering
Questions
20 published articles on Gaucher Disease
NEW REGISTRY WEBSITE
Worldwide
Community
• Option to create an online care team of other health care providers for each patient
• Opt in to a worldwide directory of registry physicians
• Real time, fully interactive individual
patient reports
• Option to share with other care team members and patients’
Data Entry
• Simplify data entry with improved
Case Report Forms
• Use the task list to keep data complete and accurate
• Compare your patients clinical data
with benchmarks from other regions
• Download your own site’s data
Aggregate Reports
New Data Entry & Case Report Forms
•Therapeutic Goals Report by site,
country, and global population to
better analyze the six published
therapeutic goals.
• Single sign on access to both new
Gaucher Registry website
and new web-based data entry tool.
•Disease Management Response:
view the site, country, and global
Registry aggregate response
to treatment.
• First & Follow up clinical Assessments Forms.
• Standardized demography
using FDA global study standards.
• New pulmonary artery pressure Assessment Forms.
Site Data Download Report
•RegistryNXT! allows your site’s patient clinical summary data to be downloaded into a spreadsheet for easy sorting and custom site data analysis.
• Skeletal assessments based on radiology exam.
• Streamlined labs.