More Information Below
Complementary Access to NCCHR Exhibits at 5 PM
Glenn Room
100 Ivan Allen Jr Blvd NW, Atlanta, GA 30313
The focus of this workshop is on how advances in the field of data science are advancing research in cystic fibrosis (CF) and related illnesses. As CF researchers increasingly rely upon access to large-scale longitudinal data and innovative analytical tools to study the progression of CF, treatment effectiveness and long term outcomes of those diagnosed with CF, they will be able to further their understanding of these areas.
This meeting will highlight the NIH-funded GACFDEW – the Georgia CF Data Exchange & Warehouse. It is a cloud based FAIR compliant data repository which unites clinical, research, biorepositories, cohorts and laboratories generated data from over 1000 individuals who have been diagnosed with CF across Georgia. The tool was developed as the Georgia CF Data Warehouse; however it has evolved into a collaborative environment where data can be shared among researchers and data scientists and facilitate the development of similar platforms at additional institutions.
A workshop to be held in conjunction with the 2026 North American Cystic Fibrosis Conference will be held in Atlanta, GA. At this meeting, cystic fibrosis investigators and data science professionals will gather to identify potential collaborations and new ways to use the collective power of an integrated data base system to enhance both the pace of research and the quality of care available to patients living with cystic fibrosis.
Registration will close on Monday, September 21, or earlier if tickets sell out.
We also have limited funding available to cover the cost of one night of lodging on October 5 for early career investigators, including assistant professors and below, who are already traveling to Atlanta to attend NACFC.
Arrival, check-in, and continental breakfast.
Discuss CF as a chronic disease, with changing complications over the lifespan. Discuss the utility of longitudinal cohorts and methods to identify trajectories of disease progression in people with CF. Discuss the needs of the community in their hopes to apply data science methodologies to their own research. After the session, speakers will form a panel for group discussion with workshop participants.
Moderator: Marrah Lachowicz-Scroggins (NHLBI)
Presenters: Nael McCarty (Emory), Andrea Kelly (University of Pennsylvania), Arlene Stecenko (Emory), Joshua Chandler (Emory), and Amy Ryan (University of Iowa)
Describe the CF patient data registry and other efforts by the national CF Foundation over decades to collect and make use of patient data. Discuss data-driven discoveries from a variety of fields, the importance of metadata, issues of data quality, and the importance of informatics in data science. Discuss the hurdles associated with incorporating data from heterogeneous sources and multiple institutions, including the need for data standardization and harmonization by way of a CF-specific OMOP common data model. After the session, speakers will form a panel for group discussion with workshop participants.
Moderator: Arlene Stecenko (Emory)
Presenters: Albert Faro (CF Foundation), Anirudh Prabhu (Carnegie Science), Evan Orenstein (Emory and Children's Healthcare of Atlanta), Manoj Bhasin (Emory), and Rishi Kamaleswaran (Duke)
Discuss the GACFDEW’s process of integrating clinical data from the EMR, data from the longitudinal study cohort, the collection of patient-derived samples via the CF-BR, and clinical and laboratory research data from the study of these patients and their samples. Discuss the ethical conduct of data science research via the GACFDEW. After the session, speakers will form a panel for group discussion with workshop participants.
Moderator: Nael McCarty (Emory)
Presenters: Arlene Stecenko (Emory) and Rishi Kamaleswaran (Duke)
Participants will develop study cohorts in a HIPAA-compliant manner and analyze anonymized datasets to test their own hypotheses. Available assets will include OGTT data, CGM data, actigraph data, and radiographic data from the longitudinal cohort. The mini-hackathon will build on McCarty’s experience hosting the Hack-for-CF hackathon in Atlanta in 2013.
Leads: Nael McCarty (Emory), Arlene Stecenko (Emory), and Rishi Kamaleswaran (Duke)
Attendees are invited to see the exhibits of the National Center for Civil and Human Rights. Your registration includes admission to the center.
Please email Dr. Clovis Sarmiento at csarmi3@emory.edu if you cannot find an answer to your question(s).
Please park in the World of Coca-Cola parking deck. Do not park in the Georgia Aquarium parking deck, as it is a separate facility and parking validations will not apply.
Use the following address on your GPS: 126 Ivan Allen Jr. Blvd NW, Atlanta, GA 30317
Yes. Bring your parking ticket to the event registration table, and a member of the event team will validate it.
After exiting the World of Coca-Cola parking deck, walk toward the National Center for Civil and Human Rights and turn left. Follow the sidewalk and signs toward the traffic light at Ivan Allen Jr. Boulevard. Turn right at the light and follow the signs to the lower-level entrance by the fountain.
Yes. Please bring your own laptop, as you will use it during Session 4. A dedicated Wi-Fi network will be available, and connection information will be provided at check-in. A power outlet will also be available at each table.
Yes. Attendees who indicated on their RSVP that they would like to visit the National Center for Civil and Human Rights exhibits will receive a complimentary pass when they check in for the workshop.
Passes will be distributed at the event registration table in the lower-level pre-function area. Please see a member of the Emory or Children’s team if you have questions about your pass.
Yes. A limited subsidy is available to help eligible early-career investigators travel to Atlanta one day early to attend the workshop before NACFC.
The subsidy covers up to $230 for one night of lodging and up to $20 for one dinner.
To be considered, you must:
Complete the subsidy request section of the workshop registration form and provide all requested information so the event team can confirm your eligibility.
Applicants will be notified by email by mid-September if their request is approved. The email will include instructions for the next steps.
Funding is available for approximately 40 early-career investigators.
Requests will be reviewed in the order they are received and approved until available funding has been allocated. Submitting a request does not guarantee approval. Each request will be reviewed carefully to confirm that the applicant meets the eligibility requirements.
Approved participants must be established as payees in Emory University’s payment system. Instructions for completing the payee setup process will be provided to participants whose subsidy requests are approved.
You must submit:
The receipts must clearly show the amount paid. Credit card statements or booking confirmations alone may not be accepted as proof of payment.
Reimbursement requests will be processed after the workshop. Please allow approximately two to three weeks for the event team to submit the request and for payment to be issued.
Processing may take longer if required receipts, payee information, or approvals are incomplete.
Funding for this conference was made possible, in part, by Grant R13HL186728 from the National Heart, Lung, and Blood Institute (NHLBI).
The views expressed in written conference materials or publications and by speakers and moderators do not necessarily reflect the official policies of the National Institutes of Health; nor does mention of trade names, commercial practices, or organizations imply endorsement by the U.S. Government.