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

‘Research Done Differently’

Create a new

web-based, cloud-

accessible, secure

registry platform

Empower patients,

family members &

caregivers as

collaborators

Engage existing

stakeholders in the1) patient,

2) research,

3) government,

4) insurance &

5) pharmaceutical

communities ...

Research Revelations

Merge proven

technologies

Enable new

patient-friendly

applications

Expand registry

usage & scope

Creative Merger

CDEMS ~ Chronic

Disease Electronic

Management System

> more than a decade of

use, but not cloud-based

DataWeb EHR ~ > specialists in cloud-based

medical records

> an early innovator in

cloud computing and EHR

Research Practicality

Reinvent

existing research &

market-proven tools

Low projected cost … less than $100,000

Rapid time to implement

less than 1 year

Model readily adaptable

to multiple rare diseases

Prototype disease model …

Pulmonary Fibrosis

200,000 US patients …

1M worldwide

40,000 annual deaths

in the US / 1 every 13 min.

No known cause,

treatment or cure

No existing national

patient registry … but,

a well-identified and

willing patient population

Research reliability ...

Pulmonary Fibrosis Advocates (PFA)

nationwide network of patients, family members and

caregivers (+ 76 support groups in 34 states)

World-class clinicians and reseachers … from geographically diverse research universities

Public ~ private technology partnership

Bi-partisan poliltical support for the project

see ... Joint Declaration of Key Principles for Rare Disease

Registry Platforms … endorsed by NORD, EURODIS & CORD

International support for the concept ...

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