Age 1.b.i.3. Demographics: age Aggregation Analysis_of_biospecimens Analysis_of_biospecimens_collected_by_the_network 3.d.i. What types of analyses do they conduct on them? Analysis_of_biospecimens_from_biobanks 3.c. What types of analysis are done on them? Applications 4.i. What data (statistical) analysis tools, if any, are available for researchers through the network? Approaches 4.g.ii. What applications (e.g., UIMA, cTAKES, NegEx, MetaMap, many different parsers, etc.) or approaches (examples are machine learning, rule-based) are being used? Architecture 4.b.ii. What is the architecture of the query distribution? BSource BType 3.b. What types of biospecimens are collected? Before_it_leaves_the_local_site 4.h.i. (Y/N) Are data aggregated before the data leave the local site and are shared with the network? Biobank 3.a. (Y/N) Does the network have biobanks? Biospecimen Broad_use_of_biosamples 1.f.ii. Do patients consent to the broad (meaning data may be analyzed for other research) or specific use of their biological specimens? Broad_use_of_electronic_data 1.f.i. Do patients consent to the broad (meaning data may be analyzed for other research) or specific use of their electronic data? Clinical_Focus 1.e.i. (Y/N) Does the network have a focus (i.e., topic area or purpose)? 1.e.i.1. What does the network focus on? Clinical_care_delivery 1.a.iii. (Y/N) Is there evidence from the past that show the network can be used for clinical care delivery or quality improvement? Clinical_data Collected_by_the_network_for_research 3.d. (Y/N) Do researchers in the network collect biospecimens for research purposes? Common_data_model_used 4.d.i.(Y/N) Does the network use a common data model (CDM)? 4.d.ii. Which CDM is used? Data_Processing Data_collected_in_clinical_trials 1.g.ii.3. What are the sources of Clinical Trials data collected in the network? (e.g., coded diagnostics, drug information, procedures, lab orders, diagnostic results, imaging data, biospecimen, health-related quality of life) Data_mapping_and_transformation_mechanism 4.d.iii. How are the data transformed and mapped? Data_sharing Demographics Description 4.e.i.1. What standards, possibly home grown, are used? If home grown, is there a way to map back to standards? (Data Dictionary?) ED_Type 4.f. List the types of data that are being collected or accessed and incorporated into the network (e.g., EHR data, claims, patient-reported outcomes, etc.). Electronic_Data Evidence_of_Clinical_Studies_Capacity Evidence_of_clinical_care_or_quality_improvement 1.a.iii.1. What is the evidence? Evidence_of_longitudinal_follow-up_studies 2.b.i. What is the evidence? Evidence_of_randomized_control_trials 2.d.i.1. What is the evidence? Extraction Finances From_existing_reports_by_passively_reviewing_the_data 2.b.ii. (Y/N) Can researchers conduct follow-up or ongoing observation from existing reports by passively reviewing data rather than actively pulling it? Gender 1.b.i.4. Demographics: gender Geography 1.b.i.2. Demographics: geography Governance_involvement_mechanisms 1.g.i. (Y/N) Are patients involved in the decision-making process on the use of the data they provided to the network? 1.g.i.1. What are the roles patients play and in what mechanism? How are they involved in the decision-making process? Harmonization Health_care_derived_data 1.g.ii.2. What are the sources of Health care-Derived data collected in the network? (e.g., coded diagnostics, pharmacy orders, pharmacy fulfillment, procedures, lab orders, diagnostic results, imaging data) Healthcare_organizations_engagement 2.c.i. (Y/N) Are healthcare organizations (hospitals, outpatient centers) actively participating or engaging in research activities conducted by the network? Integration_for_longitudinal_analysis 4.j.i. (Y/N) Are administrative, billing, and/or clinical records integrated into longitudinal patient-level data? (Are administrative, billing, and clinical records kept in individual places or lumped in with patient-level data?) Longitudinal_follow_up 2.b. (Y/N) Have researchers conducted studies that involve longitudinal (multiple values rather than one time) follow-up? Mechanisms_of_participation 2.c.ii. How? (Examples: by referring patients, giving access to EHRs, etc.) Metadata_collected 4.e.i. (Y/N) Does the network collect additional fields to help with analysis and interpretation (metadata)? Methods_for_Data_Security 4.a. What type of security technology does the network use? Natural_language_processing 4.g.i. (Y/N) Does the network use natural language processing? Network_Characteristics New_studies_in_the_same_or_different_condition_from_the_clinical_focus 1.a.ii.1. Can the network be used for new studies in the same or a different condition? No_consent_required 1.f. (Y/N) Does the network use informed consent forms? Number_of_Lives_Covered 1.a. How many people does the network cover or involve? Patient-related_policies Patient_Population Policies Policies_for_protecting_proprietary_data 1.g.iii.1.c. Policies for protecting proprietary data Publications Quality_improvement 1.a.iii. (Y/N) Is there evidence from the past that show the network can be used for clinical care delivery or quality improvement? Query_distribution_via_central_hub 4.b.i. (Y/N) Are queries distributed via a central hub? Randomized_controlled_trials_using_network_data 2.d.i. (Y/N) Have there been any randomized control trials using the data collected in the network? Re-contact_for_new_study_needed 1.f.iii. (Y/N) Can patients be re-contacted for consent for a new study? Requirements_for_institutional_investigators_to_collaborate_with_each_other 1.g.iii.1.a. Data use and sharing policies for institutional investigators to collaborate with each other using the data Requirements_for_sharing_outside_the_network 1.g.iii.1.b. Policies for sharing data outside the network Results_linkable_to_patient_outcomes 3.d.ii. Were they able to link the analysis/research results back to patient outcomes? Self-reported_data 1.g.ii.1. What are the sources of Self-Reported data collected in the network? (e.g., conditions, medications, medication adherence, procedures, labs/imaging, health-related quality of life) Source Sources_of_funding 1.c.ii. What are the current sources of funding? Standardized_terminologies_adopted 4.c.i. (Y/N) Does the network use standardized terminologies (i.e., ICD-9, SNOMED, etc.)? 4.c.ii. Which terminologies? Statistical_Analysis Studies_published_in_peer_reviewed_journals 2.a. Three most recent (or high impact) studies published in peer-reviewed journals Study_type Tools_used 4.j.ii. What informatics tools are used? Total_annual_budget 1.c.i. What is the total annual budget? Total_annual_cost_conducting_studies 1.c.i.2. How much of that budget is dedicated to conducting studies? Total_annual_cost_network_infrastructure_and_maintenance 1.c.i.1. How much of that budget is dedicated to infrastructure and maintenance? 1.c.iii. How much does it cost each year to maintain and update the network? Transformation_method 4.h.ii. How are the data transformed (i.e., based on what criteria are the data aggregated)? Type_of_Consent 1.f. (Y/N) Does the network use informed consent forms? Using_mechanisms_to_standardize_data_elements 2.b.ii.1. How do researchers standardize those data items? (e.g., how do researchers standardize survey type questions over a period of time?) Years_in_existence 1.d. How many years has this network existed? Racial:Ethnic 1.b.i.1. Demographics: racial/ethnic PCORI