Global Rare Diseases Patient Registry Data Repository
GRDR
www.grdr.infoNIH Rare Disease Day
Feb. 27, 2013
Office of Rare Diseases Research (ORDR)
Yaffa [email protected]
Patient Registries are an essential tool and important resource
Global Rare Diseases Patient Registry Data RepositoryGRDR
Repository of
AggregatedDe-identified
Data
ExistingRegistrie
s
1. Patients providehealth information & test results using common data elements (CDEs)
4. GRDR aggregates de-identified patient clinical information & biospecimen data
5. De-identified registry data available to researchers for biomedical studies & clinical trials
7. Registry owners notify identified participants. Interested participants are directed to study PI
Patient Registries
Assign GUID
2. A Global Unique Patient ID (GUID) is assigned; patient data mapped to CDEs
3. Patient data linked to biospecimens via the GUID interfacing with RD-HUB
6. Researchers identify potential study participants; submit contact request to original registry owner
NewRegistrie
s
RD-HUBBiospecime
ns
Collecting Patient Data in a standardized manner
Common Data Elements http://www.grdr.info
Common Data
Elements
Identifiers
Socio-Demographics
Rare Disease Diagnosis
Family History
Birth & Reproductive History
Medications & Dietary Supplements
Utilization
Research Participation
ORDR/GRDR Mapping Guide
Registries with
diverse need and interest
Examples
MedicationsDiagnosesGenetic TestingDevices
Learn from
respondents
Develop Mapping strategy
Use:Unified Medical Language System (UMLS)Mapping Guide
Integrating Electronic Health Record
Common Data
Elements
Identifiers
Socio-Demographics
Rare Disease Diagnosis
Family HistoryBirth & Reproductive
HistoryMedications & Dietary
SupplementsUtilization
Ascertain whether a hybrid between the EHR and the organization's registry can be used to populate the GRDR repository
http://cde.nih.gov
Linking to Biospecimens Data http://biospecimens.ordr.info.nih.gov/
ORDR Open-source Patient Registry template
The Office of Rare Diseases Research (ORDR) at the National Center for Advancing Translational Sciences (NCATS) provides this Opensource Patient Registry Template toolkit as a service to the rare disease community as part of the Global Rare Diseases Patient Registry and Data Repository project. This opensource toolkit enables any organization to implement a patient registry, while using the ORDR/GRDR CDEs, in a manner that makes it easy to share de-identified registry data with the GRDR Data Repository.
ORDR Open-source Patient Registry Template
ORDR Open-source Patient Registry Template
Ability to customize registry appearance, content and functionality
Set up to collect data from individual patients using the ORDR/GRDR CDEs
Ability to add additional CDEs for data collection
Ability to generate charts of de-identified patient data
Ability to export and transfer data into the ORDR/GRDR data repository
ORDR Open-source Patient Registry Template
ORDR Open-source Patient Registry Template
ORDR Open-source Patient Registry Template
Access to the Open-source Patient Registry Template
Office of Rare Diseases Research
Dr. Steve Groft, Phar.D., DirectorDr. P.J. Brook (NIAAA)Dr. Davis EcksteinMs. Marita Eddy (Angel Flight)Dr. John FergusonDr. Rashmi Gopal-SrivastavaMr. Chris GriffinMs. Henrietta Hyatt-KnorrMs. Susan OrrDr. Yaffa Rubinstein