DEVELOPMENT OF A LINKED DATABASE FOR CYSTIC FIBROSIS RESEARCH BY INTEGRATING A PATIENT REGISTRY WITH ADMINISTRATIVE CLAIMS DATA

Author(s)

Jiao T1, Biskupiak JE1, Ye X1, Unni S1, Dowd C2, Fink A2, Feng L2, Erdo J2, Brixner D3
1University of Utah, Salt Lake City, UT, USA, 2Cystic Fibrosis Foundation, Bethesda, MD, USA, 3Personalized Health Care, University of Utah Health Sciences Center, Salt Lake City, UT, USA

OBJECTIVES: CF, a genetic disorder affecting over 30,000 people in the US, is associated with substantial clinical and economic burden. To investigate comprehensive research questions, an integrated database that includes demographic, clinical, health resource utilization (HRU), and cost information is needed. This study aimed to develop the integrated database, and describe its characteristics. METHODS: Clinical data was obtained from the CF Foundation Patient Registry (CFFPR) and administrative claims data from Inovalon’s MORE database. All individuals in the CFFPR between 1/1/2000 and 12/31/2014 were linked with patients, who had ≥1 CF-related diagnosis claim (ICD-9: 277.0x) in the MORE database. An IRB approved, deterministic linkage using combinations of first and last name, sex, birth date and current zip code was performed. Demographic, clinical characteristics, health resource utilization (HRU) and insurance status were collected and represented in the linked database.  RESULTS: There were 37,582 and 62,658 CF patients in the CFFPR and MORE database respectively, of which 8,709 were linked. For the linked patients, mean duration of continuous enrollment was 3.4 years; with a mean age of 12.1 years; 4,225 (48.5%) were female; and 8,105 (93.1%) were white. For patients with more than 1 year of follow-up, 2,323 (34.8%) had pulmonary exacerbations, 1,297 (19.4 %) had CF-related diabetes, and 304 (3.5%) patients had lung transplantation. For HRU, 8,647 (99.3%) had at least one outpatient visit, 3,687 (42.3%) had a hospitalization and 957 (11.0%) patients had a home-service claim. Inpatient and outpatient prescriptions claims were available for 2,115 (24.3%) and 7,165 (82.3%) patients, respectively.  CONCLUSIONS: The integrated database provides a comprehensive resource for CF research to determine the clinical and economic burden of various treatment approaches. Future iterations of the database will incorporate cost data.

Conference/Value in Health Info

2016-05, ISPOR 2016, Washington DC, USA

Value in Health, Vol. 19, No. 3 (May 2016)

Code

PRM55

Topic

Real World Data & Information Systems

Topic Subcategory

Reproducibility & Replicability

Disease

Neurological Disorders, Respiratory-Related Disorders

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