Accelerate Research. The NTM Research Registry is now enrolling patients.
The Bronchiectasis and NTM Research Registry is a project of the Bronchiectasis and NTM Initiative.
The Registry provides a pool of patients as potential clinical trial participants, accelerating the rate of research into new treatments for NTM, meaning NTM patients may experience improved quality of life.
Participation is voluntary, meaning that every patient enrolled has agreed to be entered into the database, and patients can be enrolled through one of the participating centers located throughout the country.
“The Registry expansion to include NTM patients represents a tremendous opportunity to raise awareness of NTM lung disease and to learn more about various aspects of it, including why some get sick and others don’t, and how treatments can be standardized or modified to the greater benefit of patients,” said Philip Leitman, President of NTM Info & Research (NTMir).
NTMir funded the initial work to expand the Registry and will cover the cost of the first 1,500 NTM patients enrolled in it. The organization is also currently exploring the possibility of adding new participating institutional sites in order to broaden the reach of the Registry across the country.
A list of participating centers with approval is below, and we will update it as the remaining centers obtain their approvals.
Registry Centers with Institutional Approval:
- University of Connecticut, Farmington, CT; Physician: Mark Metersky, MD; Coordinator: Mariola Borla-Smialek; Phone: 860-679-2996; Email: sm*****@uc**.edu
- Columbia University Medical Center, New York, NY; Physicians: Byron Thomashow, MD and Angela DiMango, MD; Coordinators: Beth Whippo, MSN, RN-BC and Patricia Jellen, MSN, RN; Phone: 212-305-1158; Email: be*****@ny*.org and je****@ny*.org
- Mount Sinai St. Luke’s/Mount Sinai Roosevelt, New York, NY; Physicians: Gerald Turino, MD and Edward Eden, MD; Coordinator: Lori Tartell, RN; Phone: 212-523-5471; Email: lt******@ch****.org
- University of Pennsylvania, Philadelphia, PA; Physician: Greg Tino, MD; Coordinators: Jason Tanenbaum and Victoria Fleck; Phone: 215-662-6280 and 215-662-3115; Email: ja*************@up**.edu and vi************@up**.edu
- Georgetown University Hospital, Washington, DC; Physician: Anne O’Donnell, MD; Coordinator: D. Michele Cooney, RRT, RPFT; Phone: 202-444-0895; Email: co*****@ge********.edu
- National Institutes of Health (NIH), Bethesda, MD; Physicians: Kenneth Olivier, MD, MPH and Pamela McShane, MD; Coordinator: Jan Nguyen; Email: ja********@ni*.gov
- University of North Carolina School of Medicine, Chapel Hill, NC; Physician: Michael Knowles, MD; Coordinators: James Coxe and Kelli Sullivan; Phone: 919-843-3333; Email: jc***@li**.edu and Ke************@me*.edu
- Mayo Clinic, Jacksonville, FL; Physicians: Margaret Johnson, MD and Jack Leventhal, MD; Coordinator: Ena Whitelaw; Phone: 904-953-0853; Email: Wh**********@ma**.edu
- University of Miami, Miami, FL; Physician: Matthias Salathe, MD; Coordinator; Eliana Mendes, MD; Phone: 305-243-2568; Email: em*****@me*.edu
- Mayo Clinic, Rochester, MN; Physician: Timothy Aksamit, MD; Coordinator: Kathy Mieras; Phone: 507-284-9187; Email: mi*************@ma**.edu
- University of Texas, Tyler, TX; Physician: David Griffith, MD; Coordinator: Chris Herrick; Phone: 903-877-5569; Email: Ch*****************@ut***.edu
- National Jewish Health, Denver, CO; Physician: Charles Daley, MD; Coordinator: Adrah Levin, MPH; Phone: 303-398-1407; Email: le****@nj******.org
- Oregon Health & Science University, Portland, OR; Physicians: Alan Barker, MD and Kevin Winthrop, MD; Coordinator: Sarah Siegel; Phone: 503-494-7800; si*****@oh**.edu
