#NACFC2016 – New Database Could Better Identify CF Patient Variables, Outcomes After Lung Transplant

A new database to improve the characterization of cystic fibrosis (CF) patients and more effectively identify variables that may impact patient success following lung transplant, was proposed recently at the 30^th Annual North American Cystic Fibrosis Conference (NACFC), Oct. 27-29, in Orlando, by Dr. Elliott Dasenbrook, of the Cleveland Clinic.

Dasenbrook proposed the database in a speaking presentation titled “Description of a novel database: merging the US CF patient registry with the scientific registry of transplant recipients.”

Health professional widely accept that patients with CF end-stage lung disease are good candidates for lung transplant. The U.S. lung allocation score (LAS) system prioritizes transplant candidates according to their calculated risk of mortality, but the second highest rate of mortality among patients on the waitlist is found among CF candidates, despite their relative youth. The information suggests that the LAS system does not accurately reflect the risk of waitlist mortality for CF candidates.

Currently, the Scientific Registry of Transplant Recipients (SRTR) includes variables from the time of wait-listing through the post-transplant period for all U.S. transplant candidates and recipients. The CF Foundation Patient Registry (CFFPR), listing nearly 90 percent of the U.S. CF population, includes disease-specific variables like microbiology that are not captured by the SRTR. It also includes longitudinal information in the years before wait-listing.

Dasenbrook and his colleagues aimed to create a novel database by linking the SRTR and CFFRR to accurately describe the characteristics of CF patients before transplant. The team included any SRTR candidate in the CFFPR (2004-2013). The selection of candidates encompassed 1987-2014. Researchers then used an algorithm that included name, birthdate, sex, race, death date, state of residence, and ZIP code, to match CFFPR candidates to SRTR candidates and recipients.

Results from transplant patients in the post-LAS implementation era, 2006-2014, showed that 1,889 recipients were matched to recipients in the CFFPR.

The novel database was capable of fuller characterization of CF patients who undergo a transplant. It gave an extensive characterization of CF-related complications, such as CF-related diabetes, impaired glucose tolerance, cirrhosis, osteoporosis, gastroesophageal reflux disease, depression, and sinus disease. It also detected several microorganisms in the respiratory tract: P. aeruginosa, methicillin-resistant Staphylococcus aureus, S. maltophilia, A. xylosoxidans, nontuberculous mycobacteria, and any B. cepacia complex.

The authors emphasized that the new database is a potential tool for optimizing the timing of referral for transplant and for identifying all variables to effectively predict the risk of waitlist and post-transplant morbidity and mortality for in CF patients.