1. Research Registries Reimagined
‘Rare disease’ research problems?
Research slowed, or not undertaken, due
to the lack of a national patient registry
Existing registries inaccessible to
patients, caregivers and clinicians
Registries too ‘institutionalized’ or
‘regionalized’ to be globally helpful
Pulmonary Fibrosis Advocates - 501(c)(4) - Minnetonka MN - www.pfadvocates.org
2. ‘Research Done Differently’
Create a new
web-based, cloud- Engage existing
accessible, secure stakeholders in the
registry platform 1)patient,
2)research,
Empower patients, 3)government,
family members & 4)insurance &
caregivers as 5)pharmaceutical
collaborators communities ...
3. Research Revelations
Creative Merger
Merge proven CDEMS ~ Chronic
technologies Disease Electronic
Management System
Enable new > more than a decade of
use, but not cloud-based
patient-friendly
applications
DataWeb EHR ~
> specialists in cloud-based
Expand registry medical records
usage & scope > an early innovator in
cloud computing and EHR
4. Research Practicality Prototype disease model …
Pulmonary Fibrosis
Reinvent 200,000 US patients …
existing research & 1M worldwide
market-proven tools
40,000 annual deaths
Low projected cost … in the US / 1 every 13 min.
less than $100,000 No known cause,
treatment or cure
Rapid time to implement
less than 1 year No existing national
patient registry … but,
Model readily adaptable a well-identified and
to multiple rare diseases willing patient population
