Table 2. Science of patient input resources with patient data sources and measurement/metrics.

Shown is a selected sample; please visit www.fastercures.org/patients-count-resources for a listing of and links to more than 70 resources.

OrganizationFrameworksMethods and
toolkits
Sources of
patient
data
Training
programs
Measurement
and metrics
FasterCuresFrom anecdote
to actionable:
The case
for patient
perspective
data
TRAIN Central
Station
Expanding
the science
of patient
input:
Building
smarter
patient
registries
FDADraft Guidance
for Submitting
Patient
Preference
Information
“Voice of the
patient”
reports
Patient
representative
program
Genetic
Alliance
PEER platform
NCATSCTSA consortium
principles of
community engagement
Global rare
disease
registries
NORDNatural
histories
patient registry
platform
PCORIPatient-
engagement
rubric
Methodology
standards
PCORnet:
The national
patient-
centered
clinical
research
network
PCORI
ambassadors
program
Patient engagement
rubric and
evaluation
framework
M-CERSIAssessing
meaningful patient
engagement in
drug development:
A definition,
framework, and
rubric