Global Rare Diseases Patient Registry Data Repository GRDR

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Patient Registries are an essential tool and important resource

Transcript of Global Rare Diseases Patient Registry Data Repository GRDR

Global Rare Diseases Patient Registry Data Repository

GRDR

www.grdr.infoNIH Rare Disease Day

Feb. 27, 2013

Office of Rare Diseases Research (ORDR)

Yaffa RubinsteinYaffa.rubinstein@nih.gov

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