cystic fibrosis foundation patient registry annual data report 2015

What's new in cystic fibrosis data registry 2015?

AUSTRALIAN CYSTIC FIBROSIS DATA REGISTRY – ANNUAL REPORT 2015 7 Future Developments • The ACFDR under guidance of its Steering Committee, is evolving its analysis of Registry data, with an aim to including greater time–series and sub–cohort analysis, and defining a suite of risk adjusted benchmarked clinical indicators that measure best

What is the proportion of people with cystic fibrosis in the registry?

12 PEOPLE WITH CYSTIC FIBROSIS Figure 1.2 shows that the proportion of adults in the Registry as a whole was 52.0 percent at 31 December 2015, a trend that continues to gradually increase since the Registry commenced. The proportions for states and territories are shown in Table 1.2, although those for smaller jurisdictions

What data is included in the CF Foundation patient registry?

The CF Foundation Patient Registry (CFFPR) is composed of data collected via the CF Foundation Care Center Network, including participant demographic characteristics, routine clinical measurements, therapeutic history, hospitalizations, transplant, and vital status.

What has the cystic fibrosis data centre done for You?

Since 1998 it has collected diagnostic and treatment data on over 90% of the population of cystic fibrosis patients in Australia, leading to a greater understanding of the disease’s characteristics and the standard and type of care provided to patients across Australia.

How many patients were seen at CF Foundation in 2012?

As reported by the care centers during the annual reaccreditation process, there were 1,875 patients who were seen at accredited care centers in 2012 who did not provide consent to participate in the registry. This represents 6.3% of patients seen at CF Foundation–accredited care centers in 2012.

When was the Cystic Fibrosis Foundation established?

The Cystic Fibrosis Foundation Patient Registry was established in the 1960s and has continually evolved to keep pace with changes in technology and regulations, as well as improvements in the treatment of cystic fibrosis (CF).

How is CFFPR used?

The CFFPR contains data on almost 50,000 unique patients and has been used for research reported in over 120 peer-reviewed manuscripts, in addition to numerous quality improvement and benchmarking initiatives. The CFFPR captures a substantial portion of the U.S. patient population with CF and has robust and high-quality data in key variables of interest, such as lung function, nutritional status and hospitalizations. Data in the registry have been used for many years to compare center-level variation in care and outcomes. As CF registries are implemented in other countries, the CFFPR has also been used to compare treatment and outcomes between the United States and other countries ( 35 ). International comparisons leverage variation in availability and physician preference of therapies and can be facilitated with standardization of data collection across registries.

How many people in the US have CF in 2012?

On the basis of the two methods of estimating the number of persons with CF in the United States using national birth and death data, we derived estimates of 33,292 and 34,327 individuals with CF in the United States in 2012, respectively. In 2012, the CFFPR contained 27,804 individuals. Thus, approximately 81–84% of persons with CF were captured in the CFFPR in 2012, the most recent year for which national birth and mortality data were available.

How is CFFPR data collected?

The CFFPR data are collected through a web-based portal, PortCF, which contains five electronic data capture forms: demographic, diagnosis, encounter, care episode, and annual review forms. All data are entered by staff at the care center programs from the data available in the medical record or in forms completed by patients or families. CFFPR questionnaires are available in the annual reports ( 2 ).

What is CF Foundation?

All individuals diagnosed with CF and associated disorders (CFTR-related metabolic syndrome and CFTR-related disorders) who are seen at CF Foundation–accredited care center programs and provide informed consent are eligible to participate in the CFFPR. The CF Foundation has developed and sustains a network of 121 accredited CF care centers (comprised of 121 pediatric care programs and 105 adult care programs) and 51 affiliate programs across the United States ( see additional information available in the online supplement). All accredited care programs are required to participate in the CFFPR. A portion of care center funding is based on the number of patients enrolled in the CFFPR and the completeness of their records. Each program obtains institutional review board approval and written informed consent and assent, as appropriate, from participants and/or their legal guardians. The CF Foundation provides online user manuals, data entry guidelines, training sessions, and user support for care center staff who enter data into the CFFPR. The CF Foundation serves as the coordinating center for data collection and data analysis.

When was CFFPR established?

The CFFPR was established in the 1960s to collect information on patient demographics and survival ( 3 ). Regular updates have been made to comply with changes in regulations, improvements in data collection, and advances in new technology ( Figure 1) ( 4 ).