Volume 59 | February 28, 2023
A program of NIH’s National Center for Advancing Translational Sciences
N3C won the Grand Prize for the HeroX DataWorks Challenge
for Data Sharing!

The Federation of American Societies for Experimental Biology (FASEB) and the National Institutes of Health (NIH) sponsored the DataWorks! challenge,focusing on a bold vision of data sharing and reuse. The DataWorks! Prize is an annual challenge that showcases the benefits of research data management while recognizing and rewarding teams whose research demonstrates the power of data sharing or reuse practices to advance scientific discovery and human health.

The National COVID Cohort Collaborative was a Grand Prize winner! 
We want to thank the amazing community that designed, developed and contributed to this resource, and we are extremely grateful for the wonderful research teams.

The N3C is the largest national, publicly available HIPAA-limited dataset in US history. The innovative data governance and engineering strategy and public-private-government partnership has made broad sensitive clinical data sharing possible. Clinical informatics has been siloed and competitive; N3C has galvanized sharing of data, methods, and artifacts; furnishing full provenance for rigor, reproducibility, and transparency; and attribution for all types of contributors. The unprecedented availability of this data has catalyzed 400+ collaborations collectively involving 4,500+ researchers from 300+ institutions in 25 countries. 

Register to hear Melissa Haendel speak about "Democratizing Access to Clinical Data"
on Friday, March 10, 2023 at 9am/12pm ET
What the Research Community is Saying about N3C
Kerrie DeMarco, PhD
Alliance Office Branch Chief
Division of Research Innovation and Ventures (DRIVe)
Biomedical Advanced Research Development Authority (BARDA)
Administration for Strategic Preparedness and Response (ASPR)
U.S. Department of Health & Human Services (HHS)
“N3C represents a truly amazing clinical data resource and a unique community to utilize that data for future EHR implementation. The Pediatric COVID-19 Data Challenge was an ambitious community challenge that leveraged N3C to catalyze the development of computational models to predict pediatric patients at risk for hospitalization and severe outcomes. Teams in the competition drew together multiple disciplines, spanned multiple geographic areas and ranged from academic institutes to large companies to a single citizen scientist. Some of these teams also leveraged insights and concept sets already developed from the N3C community. N3C continues to bring valuable resources to allow researchers to gain insights into COVID-19 and to develop capabilities for use in future pandemic response.”
Expanded Focus
N3Community Real-World Data Forum 
Effective March 13, 2023

Expanded Topics and Change in Frequency!
Forum topics expansion: Transitioning N3Community Forum from Covid-focused topics to a wider range of topics including Real World Data (RWD) analytics. 

New Forum meeting pattern effective March 13, 2023: On every 2nd and 4th Monday at 5pm ET/2pm PT. 

Forum Zoom change: There will be a new Zoom host. Registered forum attendees will be automatically moved to a new Zoom. Registered attendees will receive an email with a new Zoom link next month.

Share your thoughts: Looking for ways to bring relevant and exciting presentations to the Forum. Let us know if there are topics, presentations, speakers you would like to see: bit.ly/N3CForumFeedback 

Read more about N3Community Forum Changes and updates here
Important Publication Reminder!
REMINDER: All N3C publications and presentations must be submitted to the Publication Committee for review.

N3C researchers are reminded that in accordance with N3C Attribution & Publication Principles and N3C User Code of Conduct, all enclave data ⁠— whether as tables, figures, or text ⁠— must comply with an approved DUR and must receive download approval from the download committee. Compliance and approval are requirements before data leave the N3C enclave environment. Likewise all potential publications ⁠— whether full-length manuscripts, conference abstracts, posters, or presentations ⁠— (whether or not they include patient data) must be submitted to the Publication Committee for approval and tracking in advance of submission for peer review and/or preprint. Submission to the publication committee happens via the form at https://bit.ly/n3c-publication-intent. Currently, published works can be browsed at https://bit.ly/n3c-google-scholar; please report any questions, gaps or errors to n3c.pubs@gmail.com

Check out the N3C Publications Committee presentation on processes and other updates on CD2H YouTube channel and learn more about the process at https://covid.cd2h.org/publication-review

Learn more about the process at https://covid.cd2h.org/publication-review
Calling all investigators, researchers, students, clinicians, scientists, educators, informaticists!

Do you have a novel N3C or EHR RECOVER approach or results to share with the medical informatics community?

This is your opportunity to submit your proposal to AMIA!

We encourage you to submit a proposal for AMIA 2023 Annual Symposium

Submissions are due to AMIA Tuesday, March 21, 2022 at 11:59pm ET.

To get approval in time, submissions are due to the N3C publication committee by Tuesday, March 7th.

How to submit to N3C Publication Committee:  https://covid.cd2h.org/publication-review

Work describing fundamental informatics methods as well as systems and applications are both welcome for one of the programmatic themes:

Programmatic Themes
  • Academic Informatics
  • Clinical Informatics
  • Clinical Research Informatics
  • Consumer Health Informatics
  • Public Health Informatics
  • Translational Bioinformatics

Types of Submission
  • Papers
  • Student Papers
  • Podium Abstracts
  • Posters
  • Panels
  • Informatics Debate
  • Workshops
  • Systems Demonstrations


Please let us know if you have submitted at cd2h@cuanschutz.edu.
N3C Recommended Concept Set

N3C Recommended published concept sets are now available in the N3C Enclave Concept Set Browser. To view the N3C Recommended concept sets, log into the N3C Enclave Concept Set Browser and check the “N3C Recommended” filter box in the upper left hand corner of the screen. 


WHAT IS AN N3C RECOMMENDED CONCEPT SET
The N3C Data Liaisons and Logic Liaisons, in partnership with the Domain Teams, have selected common medical features often required for broad use in research that support the analytics pipelines. The original N3C Recommended concept sets were selected based on 1) the comorbid conditions identified by the US Centers for Disease Control (CDC) definitions for COVID-19 as increasing risk of severe COVID-19, 2) the comorbid conditions identified in the Charlson Comorbidity Index, and 3) others as requested by N3C leadership for use in the Logic Liaison templates. 

The N3C Recommended concept sets have been vetted by clinical experts (typically N3C Domain Team leads) and the Data and Logic Liaison teams according to the below refinement and finalization process. The latest version of the listed concept sets should always be used as earlier versions represent iterations and have not passed the final review.


REFINEMENT PROCESS
The clinical experts and the N3C Data Liaisons and Logic Liaisons perform the following steps in establishing an intentional N3C Recommended concept set:
Select relevant parent concepts and their descendants from OMOP standard codes, using Charlson Comorbidity description or the relevant section the referenced CDC page to establish intention.
Utilize the OHDSI Atlas tool to explore the OMOP hierarchy to look for other potential parent codes and also to remove child codes that are non-specific to the intended scope of the concept set.
Compare the draft concept set to other related concept sets, using the Concept Set Overlap feature of the Concept Set Editor. This facilitates review of any codes that do not overlap with those in value sets from reputable stewards such as the National Library of Medicine’s Value Set Authority Center (VSAC) and the Healthcare Cost and Utilization Project (HCUP) and from existing similar concept sets within the Concept Set Browser. Add and remove concepts (and their descendants) as per recommendations from the clinical experts.
Reduce the intentional concept set expression as parsimonious as possible, retaining all the approved concepts collected in prior steps.
Iterate as needed. 
Document metadata (properties) in the Concept Set Editor for each created concept set to include: Intention, Limitations, Provenance, and at least one vocabulary and one clinical review.
Present for final vetting at the Data Liaison meeting for N3C Recommended designation.

The N3C Recommended concept sets are currently published to the N3C GitHub and are available to researchers outside the Enclave. These concept sets are in queue to be published as pdf (Properties) and json (concept ids) in Zenodo, to be available to researchers outside the Enclave. Once published, their Zenodo DOI will be posted to the Zenodo Property of the version that was published. 

The N3C Recommended concept sets listed below are used as the default concept sets in the Logic Liaison templates COVID-19 Diagnosed or Lab Confirmed Patients and All Patients which then populate the N3C Phenotype Explorer and N3C Public Health Dashboards.


CHARLSON COMORBIDITY INDEX CONCEPT SETS
CEREBROVASCULAR DISEASE
CHRONIC LUNG DISEASE
CONGESTIVE HEART FAILURE
DEMENTIA
DIABETES COMPLICATED
DIABETES UNCOMPLICATED
HEMIPLEGIA or PARAPLEGIA
HIV INFECTION
KIDNEY DISEASE
MALIGNANT CANCER
METASTATIC SOLID TUMOR CANCERS
MILD LIVER DISEASE
MODERATE OR SEVERE LIVER DISEASE
MYOCARDIAL INFARCTION
PEPTIC ULCER
PERIPHERAL VASCULAR DISEASE
RHEUMATOLOGIC DISEASE


CDC COVID-19 PEOPLE WITH CERTAIN MEDICAL CONDITIONS* 
AUTOIMMUNE DISEASE/IMMUNODEFICIENCY
CARDIOMYOPATHIES
CEREBROVASCULAR DISEASE
CHRONIC LUNG DISEASE
CORONARY ARTERY DISEASE
DEMENTIA
DEPRESSION
DIABETES COMPLICATED
DIABETES UNCOMPLICATED
DOWN SYNDROME
HEART FAILURE
HIV INFECTION
HYPERTENSION
KIDNEY DISEASE
MALIGNANT CANCER
METASTATIC SOLID TUMOR CANCERS
MILD LIVER DISEASE
MODERATE OR SEVERE LIVER DISEASE
OBESITY
PREGNANT
PSYCHOSIS
PULMONARY EMBOLISM
SICKLE CELL DISEASE
TRANSPLANT SOLID ORGAN OR BLOOD STEM CELL
SUBSTANCE USE DISORDER
THALASSEMIA
TOBACCO SMOKER
TUBERCULOSIS

*Note that some of these overlap with Charlson Comorbidities listed above.


QUESTIONS?
For questions about N3C Recommended concept sets, please contact the N3C Data Liaisons through the N3C Support Desk either by opening a support request or attending one of the Support Desk office hours on Tuesdays an Thursdays at 9:00am-9:30am PT / 12:00pm-12:30pm ET. Register for Support Desk office hours at https://washington.zoom.us/meeting/register/tJ0tfu2rqzMsEt3lffVPIs2cXWlb0s4-3e-I
N3C No Meeting Week

To help our community with a positive and productive workload, CD2H-N3C will schedule several “No Meeting Weeks” throughout the year.  Most meetings will be canceled. Impromptu meetings can still occur to push through action items as needed during no meeting week. Workgroups and Domain Teams should check with their Leads to determine meeting schedules for that week. 

1st Quarter - March 13-17
2nd Quarter - May 29-June 2
3rd Quarter - September 4-8
4th Quarter - November 13-17

N3C support will continue with regular operations. If you have any trouble logging on to the enclave, please contact NCATSAuthSupport@mail.nih.gov.  For all other issues please use the Support Desk. 
Google Drive access for N3C Researchers

If you are an N3C researcher who needs to access documents in the NCATS-owned Google Drive*, please onboard and / or update your preferred Google account here

*Note that NCATS has a business agreement with Google and documents in this drive are not mined by Google
The New Oral Health Domain Team

The Oral Health Domain Team is focused on understanding the impact of COVID-19 and Long COVID on the clinical progression, outcomes, and treatment optimization of dental patients. Our prioritized research will include 1) identifying emerging research questions and vulnerable populations in oral health peri pandemic and during the post-pandemic recovery, 2) developing electronic EHR phenotyping algorithms specific for oral diseases, 3) examining epidemiology of oral complications relating to COVID-19, 4) examining the impact of COVID-19 on oral diseases and risk factors, and 5) identifying clinical evidence for better treatments.

Team Meeting: 2nd Friday of the month at 12:30pm/3:30ET. Please email n3c-oral-health-dt@ctsa.io to join the Domain Team and get the meeting information.
N3C In the News

An additional study found vaccines actually lowered the risk of Covid-related heart problems.
- Kens5; Jeremy Baker; February 24, 2023

Vaccination against COVID-19 is associated with fewer major adverse cardiovascular events (MACE) among people who were previously infected with SARS-CoV-2, a new report suggests.
- Medscape; Carolyn Crist; February 24, 2023

Melissa Haendel, PhD, Chief Research Informatics Officer and Professor at University of Colorado School of Medicine, on behalf of her research team, National Covid Cohort Collaborative, received the Grand Prize in the FASEB DataWorks! Prize competition.
- News Wise; February 23, 2023

Fully vaccinated patients had a 40% lower risk of MACE compared with those who weren’t vaccinated, US registry data show.
- TCTMD; Michael O'Riordan; February 22, 2023

NIH-supported studies show variations in symptoms and diagnostic experiences among different racial and ethnic groups.
- POZ; February 22, 2023

Vaccination against COVID-19, whether full or partial, was associated with reductions in post-infection risk for major adverse cardiovascular (CV) events (MACE) in an analysis of the most extensive datasets on COVID-19 maintained in the US.
- Patient Care; Grace Halsey; February 21, 2023

In a study including data from almost two million individuals, COVID-19 vaccination seemed to have a protective effect against heart attacks, strokes, and cardiovascular problems linked to infection with SARS-CoV-2.
- Inside Precision Medicine; February 21, 2023

The latest figures from the CDC show the continued rise of the XBB.1.5 subvariant but national COVID trends are mostly flat. The number of U.S. counties classified as having “high” community COVID levels is less than 3% as of Friday.
- San Francisco Chronicle; Aidin Vazari; February 21, 2023

New research suggests that vaccination against COVID-19 is associated with fewer heart attacks, strokes, and other cardiovascular issues among people who were infected with SARS-CoV-2, the virus that causes COVID-19.
- XinhuaNet; February 21, 2023

Covid can cause damage to the heart on a cellular level that can lead to lasting problems, including irregular heartbeats and heart failure, preliminary research suggests.
- NBC News; Kaitlin Sullivan; February 20, 2023

First U.S. study to show lower risk in patients following SARS-CoV-2 infection.
- ScienceDaily; February 20, 2023

Analyzing the most extensive datasets in the United States, researchers from the Icahn School of Medicine at Mount Sinai have revealed that vaccination against COVID-19 is associated with fewer heart attacks, strokes, and other cardiovascular issues among people who were infected with SARS-CoV-2, the virus that causes COVID-19.
- News Medical Life Sciences; Emily Henderson; February 20, 2023

Using data from nearly 2 million US patients with a documented COVID-19 infection, a new study provides an overview of the impact of vaccination, both full and partial, on risk of MACE following infection.
- HCP Live Network; Patrick Campbell; February 20, 2023

Black and Hispanic Americans appear to experience more symptoms and health problems related to long Covid, a lay term that captures an array of symptoms and health problems, than white people, but are not as likely to be diagnosed with the condition, according to new research funded by the National Institutes of Health (NIH). 
- PharmaBiz.com; February 18, 2023

NIH-supported studies show variations in symptoms and diagnostic experiences among different racial and ethnic groups.
- NIH News Releases; February 16, 2023
Events

N3Community Forum

Presentations take place on select Mondays from 5–6 p.m. ET/2–3 p.m. PT. To attend these and future N3Community Forum presentations, please register here.

Missed an N3Community Forum or want to revisit a past Forum? You can find all the videos on our YouTube page.

March 6, 2023
Topic: Real World Data: Deidentification Methods, Considerations for Ethical AI and Data Distribution
Presenter: Brad Malin, PhD
Vanderbilt University

March 13, 2023
Topic: TBA
Presenter: TBA

March 27, 2023
Topic: TBA
Presenter: TBA

April 10, 2023
Topic: The future and the role of Cancer Data Semantics
Presenter: Umit Topaloglu, PhD and Robinette Renner, PhD
National Health Institute
If You are Interested in N3C Research Results and Conversations 
Attend the Community Forum!

Please register for your Community Forum meeting link. After registering, you will receive a confirmation email from cd2h@uw.edu containing information about joining the meeting and you will also have the ability to download the .ics file to create calendar reminders for future Community Forums.
Register for the Community Forum at https://covid.cd2h.org/forum
Help Us Give You Attribution for Your N3C Publications!

When you have a research product that is ready for publication or accepted for presentation, please submit it via the N3C Publication Intent Form, which will notify the Publication Committee of N3C output to be registered. (Research products include: manuscripts, posters, conference papers, blogs, press releases, podium presentations, etc.)

Per the N3C Attribution and Publication Principles, all manuscripts using N3C community resources must be reviewed by the Publication Committee. Non-manuscript products do not require review but should be submitted after they have been accepted by the conference to allow for promotion and tracking of collaborator accomplishments.

View the Publication Review web page for more details.
N3C Domain Teams

N3C Domain Teams enable researchers with shared interests to analyze data within the N3C Data Enclave and collaborate more efficiently in a team science environment. They include multidisciplinary Clinical Domains composed of subject matter experts, statisticians, informaticists, and machine learning specialists who focus on clinical questions surrounding COVID-19's impact on health. Cross-Cutting Domains have a varied focus that applies to multiple domains. These teams provide an opportunity to collect pilot data for grant submissions, train algorithms on larger datasets, inform clinical trial design, learn how to use tools for large-scale COVID-19 data, and validate results. N3C encourages researchers of all levels to join a Domain Team that represents their interests, or to suggest new clinical areas to explore.


Offboarding

As we approach the 3-year mark for the COVID-19 pandemic, it is a good inflection point to identify colleagues who have completed their efforts with CD2H/N3C projects and have transitioned to other great opportunities. If this is you, or perhaps your colleague, we would like to ask that you complete this 2-minute form (Bit.ly/cd2h-offboarding-form) to offboard CD2H and or N3C projects. You can continue to just get the newsletter if you wish.

We thank you for your tireless efforts in CD2H/N3C projects and look forward to working with you on many other projects.
Reporting Concerns

In the event that you come across activities that pose misalignment with the principles outlined in the Community Guiding Principles for the National COVID Cohort Collaborative (N3C), you can privately notify us using the Report Conduct Concerns form located on the N3C website under the SUPPORT menu. Your feedback is important and we will take prompt and confidential action to address your concerns. All data management incidents should also be reported to NCATS. Thank you for your contribution!
The National COVID Cohort Collaborative (N3C) is a complementary and synergistic partnership among the Clinical and Translational Science Awards (CTSA) Program hubs, the National Center for Data to Health (CD2H), distributed clinical data networks (PCORnet, OHDSI, ACT, TriNetX), and other partner organizations, with overall stewardship by NIH’s National Center for Advancing Translational Sciences (NCATS). The N3C aims to improve the efficiency and accessibility of analyses using a very large row-level (patient-level) COVID-19 clinical dataset, demonstrate a novel approach for collaborative pandemic data sharing, and speed understanding of and treatments for COVID-19.
CD2H is supported by the National Center for Advancing Translational Sciences (NCATS) 
at the National Institutes of Health
(Grant U24TR002306).