| Program . | Agility . | Longitudinality . | Multi-Modality . | Assessment: Type / Complexity . |
|---|---|---|---|---|
| SEER New York Cancer Registry11 | Low | Low | Low | Traditional/Low—example of a epidemilogic use-case registry |
| The Antiretroviral Pregnancy Registry12 | Low | Low | Low | Traditional/Low—example of a pregnancy/safety registry |
| Children’s Hospital Association Improving Pediatric Sepsis Outcomes (IPSO) Collaborative13 | Low | Low | Low | Traditional/Low—example of site-based QI registry example measuring frequency of infections; site is the unit of analysis, not the patient |
| Rare Epilepsy Network (REN)14 | Low | Low | Low | Traditional/Low—example of a rare-disease patient-powered registry collecting patient-generated health data |
| Cystic Fibrosis Registry (CFR)15 | High | High | Medium* | Transitional/Intermediate (*majority of data is eCRF-based, with subsets supplemented with patient surveys) |
| Autism Biomarker Consortium for Clinical Trials (ABC-CT)16 | Medium* | Medium^ | High | Transitional/Intermediate (*data, although highly multi-modal, was collected primarily to create an analytic data set to support planned analyzes for a single study; ∧3 tightly scheduled waves within a 24-month period) |
| NCATS National COVID Cohort Collaborative (N3C)17 | High | High | High* | Next-gen/High (*all data pulled automatically from EHRs but includes a broad swath of clinical, laboratory, medication, and demographic data) |
| ASH Research Collaborative Data Hub18 | High | High | High* | Next-gen/High (*variety of diseases, with some data collection happening across multiple modalities, eg, COVID-19) |
| MMRF CureCloud19 | High | High | High | Next-gen/High |
| Susan G. Komen ShareForCures Breast Cancer Registry20 | High | High | High | Next-gen/High |
| All of Us21 | High | High | High | Next-gen/High |
| Program . | Agility . | Longitudinality . | Multi-Modality . | Assessment: Type / Complexity . |
|---|---|---|---|---|
| SEER New York Cancer Registry11 | Low | Low | Low | Traditional/Low—example of a epidemilogic use-case registry |
| The Antiretroviral Pregnancy Registry12 | Low | Low | Low | Traditional/Low—example of a pregnancy/safety registry |
| Children’s Hospital Association Improving Pediatric Sepsis Outcomes (IPSO) Collaborative13 | Low | Low | Low | Traditional/Low—example of site-based QI registry example measuring frequency of infections; site is the unit of analysis, not the patient |
| Rare Epilepsy Network (REN)14 | Low | Low | Low | Traditional/Low—example of a rare-disease patient-powered registry collecting patient-generated health data |
| Cystic Fibrosis Registry (CFR)15 | High | High | Medium* | Transitional/Intermediate (*majority of data is eCRF-based, with subsets supplemented with patient surveys) |
| Autism Biomarker Consortium for Clinical Trials (ABC-CT)16 | Medium* | Medium^ | High | Transitional/Intermediate (*data, although highly multi-modal, was collected primarily to create an analytic data set to support planned analyzes for a single study; ∧3 tightly scheduled waves within a 24-month period) |
| NCATS National COVID Cohort Collaborative (N3C)17 | High | High | High* | Next-gen/High (*all data pulled automatically from EHRs but includes a broad swath of clinical, laboratory, medication, and demographic data) |
| ASH Research Collaborative Data Hub18 | High | High | High* | Next-gen/High (*variety of diseases, with some data collection happening across multiple modalities, eg, COVID-19) |
| MMRF CureCloud19 | High | High | High | Next-gen/High |
| Susan G. Komen ShareForCures Breast Cancer Registry20 | High | High | High | Next-gen/High |
| All of Us21 | High | High | High | Next-gen/High |
| Program . | Agility . | Longitudinality . | Multi-Modality . | Assessment: Type / Complexity . |
|---|---|---|---|---|
| SEER New York Cancer Registry11 | Low | Low | Low | Traditional/Low—example of a epidemilogic use-case registry |
| The Antiretroviral Pregnancy Registry12 | Low | Low | Low | Traditional/Low—example of a pregnancy/safety registry |
| Children’s Hospital Association Improving Pediatric Sepsis Outcomes (IPSO) Collaborative13 | Low | Low | Low | Traditional/Low—example of site-based QI registry example measuring frequency of infections; site is the unit of analysis, not the patient |
| Rare Epilepsy Network (REN)14 | Low | Low | Low | Traditional/Low—example of a rare-disease patient-powered registry collecting patient-generated health data |
| Cystic Fibrosis Registry (CFR)15 | High | High | Medium* | Transitional/Intermediate (*majority of data is eCRF-based, with subsets supplemented with patient surveys) |
| Autism Biomarker Consortium for Clinical Trials (ABC-CT)16 | Medium* | Medium^ | High | Transitional/Intermediate (*data, although highly multi-modal, was collected primarily to create an analytic data set to support planned analyzes for a single study; ∧3 tightly scheduled waves within a 24-month period) |
| NCATS National COVID Cohort Collaborative (N3C)17 | High | High | High* | Next-gen/High (*all data pulled automatically from EHRs but includes a broad swath of clinical, laboratory, medication, and demographic data) |
| ASH Research Collaborative Data Hub18 | High | High | High* | Next-gen/High (*variety of diseases, with some data collection happening across multiple modalities, eg, COVID-19) |
| MMRF CureCloud19 | High | High | High | Next-gen/High |
| Susan G. Komen ShareForCures Breast Cancer Registry20 | High | High | High | Next-gen/High |
| All of Us21 | High | High | High | Next-gen/High |
| Program . | Agility . | Longitudinality . | Multi-Modality . | Assessment: Type / Complexity . |
|---|---|---|---|---|
| SEER New York Cancer Registry11 | Low | Low | Low | Traditional/Low—example of a epidemilogic use-case registry |
| The Antiretroviral Pregnancy Registry12 | Low | Low | Low | Traditional/Low—example of a pregnancy/safety registry |
| Children’s Hospital Association Improving Pediatric Sepsis Outcomes (IPSO) Collaborative13 | Low | Low | Low | Traditional/Low—example of site-based QI registry example measuring frequency of infections; site is the unit of analysis, not the patient |
| Rare Epilepsy Network (REN)14 | Low | Low | Low | Traditional/Low—example of a rare-disease patient-powered registry collecting patient-generated health data |
| Cystic Fibrosis Registry (CFR)15 | High | High | Medium* | Transitional/Intermediate (*majority of data is eCRF-based, with subsets supplemented with patient surveys) |
| Autism Biomarker Consortium for Clinical Trials (ABC-CT)16 | Medium* | Medium^ | High | Transitional/Intermediate (*data, although highly multi-modal, was collected primarily to create an analytic data set to support planned analyzes for a single study; ∧3 tightly scheduled waves within a 24-month period) |
| NCATS National COVID Cohort Collaborative (N3C)17 | High | High | High* | Next-gen/High (*all data pulled automatically from EHRs but includes a broad swath of clinical, laboratory, medication, and demographic data) |
| ASH Research Collaborative Data Hub18 | High | High | High* | Next-gen/High (*variety of diseases, with some data collection happening across multiple modalities, eg, COVID-19) |
| MMRF CureCloud19 | High | High | High | Next-gen/High |
| Susan G. Komen ShareForCures Breast Cancer Registry20 | High | High | High | Next-gen/High |
| All of Us21 | High | High | High | Next-gen/High |
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