Ten of the 14 participating centers in the newly-available NTM Registry (as part of the COPD Foundation’s existing Bronchiectasis Registry), have received institutional approval and are now enrolling patients who are eligible and wish to be enrolled.
The Registry provides a pool of patients as potential clinical trial participants, accelerating the rate of research into new treatments which may help NTM patients. 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:
- Columbia University Medical Center/St. Luke’s Hospital; Phone: (212) 523-5471; www.stlukeshospitalnyc.org; Physician: Edward Eden, MD
- Mayo Clinic, Jacksonville, FL; Phone: (904)953-0853; www.mayoclinic.org/jacksonville; Physician: Margaret Johnson, MD
- Mayo Clinic, Rochester, MN; Phone: (507) 284-2511; www.mayoclinic.com; Physician: Timothy Aksamit, MD
- National Institute of Allergy & Infectious Diseases (NIAID); Phone: (866) 284-4107; www.niaid.nih.gov; Physician: Kenneth Olivier, MD
- National Jewish Health; Phone: (303) 388-4461; www.nationaljewish.org; Physician: Charles Daley, MD
- Oregon Health & Science University; Phone: (503) 494-7800; www.ohsu.edu; Physicians: Alan Barker, MD & Kevin Winthrop, MD
- University of Connecticut; Phone: (860) 679-2000; www.uchc.edu; Physician: Mark Metersky, MD
- University of Miami; Phone: (305) 243-2568; www.med.miami.edu; Physician: Matthias Salathe, MD
- University of Pennsylvania; Phone: (215)662-3202; www.pennmedicine.org; Physician: Greg Tino, MD
- University of Texas at Tyler; Phone: (903) 877-7777; www.uthct.edu; Physician: David Griffith, MD