Australian Cystic Fibrosis Data Registry Annual Report 2016

Rasa Ruseckaite, Susannah Ahern, Tom Ranger, Mark Alan Tacey, Joanne Tracey Dean, Madeleine Gardam, Scott C Bell, Nettie Burke, on behalf of the Australian Cystic Fibrosis Data Registry

Research output: Book/ReportOther ReportOther

Abstract

The ACFDR is a long standing Registry which commenced in 1996. Since 1998 it has collected diagnostic and treatment data on over 90 percent of the population of cystic fibrosis (CF) 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. Patients diagnosed with CF are invited to participate in the Registry through their treating site. Data about a CF patient’s diagnosis, treatment and related complications are collected regularly with the aim to improve health service delivery and better understand the treatment of CF and outcomes for patients. The ACFDR dataset enables reporting in a manner generally consistent with other CF registries, such as in Europe, the United Kingdom and the United States.
Funded by Cystic Fibrosis Australia (CFA), as of September 2016, the ACFDR is managed by Monash University, Melbourne under a shared data custodianship arrangement. The Registry is actively supported by a multidisciplinary Steering Committee, and project-related subcommittees. The composition of the current ACFDR Steering Committee is listed on page 44. The role of the Steering Committee is to lead the strategic direction of the ACFDR, to review requests for access to ACFDR data, to develop and review relevant ACFDR policies and procedures, and to review the quality of outputs from the Registry.
The ACFDR conforms to the national operating principles for clinical quality registries, as setout by the Australian Commission of Safety and Quality in Healthcare (ACSQHC). It received ethical approval that reflected the new management of the Registry by Alfred Health in February 2017. Patient recruitment is by the specialist CF centres and data collection is generally
submitted by most sites by direct data entry using the ACFDR web–based interface, although increasingly electronic transmission of data from electronic medical records or other databases to and from the registry is being requested. The ACFDR provides a publicly–available Annual Report and Jurisdictional Reports. It also provides annual reports to centres regarding centre data trends and comparisons. The ACFDR data may also be accessed by or analysed and
provided to researchers and other interested parties, further information on which is available on page 40.
Original languageEnglish
Place of PublicationMelbourne, Australia
PublisherMonash University
Number of pages45
VolumeReport No 19
Publication statusPublished - Jun 2018

Keywords

  • cystic fibrosis
  • best practice management

Cite this

Ruseckaite, R., Ahern, S., Ranger, T., Tacey, M. A., Dean, J. T., Gardam, M., ... on behalf of the Australian Cystic Fibrosis Data Registry (2018). Australian Cystic Fibrosis Data Registry Annual Report 2016. Melbourne, Australia: Monash University.
Ruseckaite, Rasa ; Ahern, Susannah ; Ranger, Tom ; Tacey, Mark Alan ; Dean, Joanne Tracey ; Gardam, Madeleine ; Bell, Scott C ; Burke, Nettie ; on behalf of the Australian Cystic Fibrosis Data Registry. / Australian Cystic Fibrosis Data Registry Annual Report 2016. Melbourne, Australia : Monash University, 2018. 45 p.
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abstract = "The ACFDR is a long standing Registry which commenced in 1996. Since 1998 it has collected diagnostic and treatment data on over 90 percent of the population of cystic fibrosis (CF) 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. Patients diagnosed with CF are invited to participate in the Registry through their treating site. Data about a CF patient’s diagnosis, treatment and related complications are collected regularly with the aim to improve health service delivery and better understand the treatment of CF and outcomes for patients. The ACFDR dataset enables reporting in a manner generally consistent with other CF registries, such as in Europe, the United Kingdom and the United States.Funded by Cystic Fibrosis Australia (CFA), as of September 2016, the ACFDR is managed by Monash University, Melbourne under a shared data custodianship arrangement. The Registry is actively supported by a multidisciplinary Steering Committee, and project-related subcommittees. The composition of the current ACFDR Steering Committee is listed on page 44. The role of the Steering Committee is to lead the strategic direction of the ACFDR, to review requests for access to ACFDR data, to develop and review relevant ACFDR policies and procedures, and to review the quality of outputs from the Registry.The ACFDR conforms to the national operating principles for clinical quality registries, as setout by the Australian Commission of Safety and Quality in Healthcare (ACSQHC). It received ethical approval that reflected the new management of the Registry by Alfred Health in February 2017. Patient recruitment is by the specialist CF centres and data collection is generallysubmitted by most sites by direct data entry using the ACFDR web–based interface, although increasingly electronic transmission of data from electronic medical records or other databases to and from the registry is being requested. The ACFDR provides a publicly–available Annual Report and Jurisdictional Reports. It also provides annual reports to centres regarding centre data trends and comparisons. The ACFDR data may also be accessed by or analysed andprovided to researchers and other interested parties, further information on which is available on page 40.",
keywords = "cystic fibrosis, best practice management",
author = "Rasa Ruseckaite and Susannah Ahern and Tom Ranger and Tacey, {Mark Alan} and Dean, {Joanne Tracey} and Madeleine Gardam and Bell, {Scott C} and Nettie Burke and {on behalf of the Australian Cystic Fibrosis Data Registry}",
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Ruseckaite, R, Ahern, S, Ranger, T, Tacey, MA, Dean, JT, Gardam, M, Bell, SC, Burke, N & on behalf of the Australian Cystic Fibrosis Data Registry 2018, Australian Cystic Fibrosis Data Registry Annual Report 2016. vol. Report No 19, Monash University, Melbourne, Australia.

Australian Cystic Fibrosis Data Registry Annual Report 2016. / Ruseckaite, Rasa; Ahern, Susannah; Ranger, Tom; Tacey, Mark Alan; Dean, Joanne Tracey; Gardam, Madeleine; Bell, Scott C; Burke, Nettie; on behalf of the Australian Cystic Fibrosis Data Registry.

Melbourne, Australia : Monash University, 2018. 45 p.

Research output: Book/ReportOther ReportOther

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N2 - The ACFDR is a long standing Registry which commenced in 1996. Since 1998 it has collected diagnostic and treatment data on over 90 percent of the population of cystic fibrosis (CF) 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. Patients diagnosed with CF are invited to participate in the Registry through their treating site. Data about a CF patient’s diagnosis, treatment and related complications are collected regularly with the aim to improve health service delivery and better understand the treatment of CF and outcomes for patients. The ACFDR dataset enables reporting in a manner generally consistent with other CF registries, such as in Europe, the United Kingdom and the United States.Funded by Cystic Fibrosis Australia (CFA), as of September 2016, the ACFDR is managed by Monash University, Melbourne under a shared data custodianship arrangement. The Registry is actively supported by a multidisciplinary Steering Committee, and project-related subcommittees. The composition of the current ACFDR Steering Committee is listed on page 44. The role of the Steering Committee is to lead the strategic direction of the ACFDR, to review requests for access to ACFDR data, to develop and review relevant ACFDR policies and procedures, and to review the quality of outputs from the Registry.The ACFDR conforms to the national operating principles for clinical quality registries, as setout by the Australian Commission of Safety and Quality in Healthcare (ACSQHC). It received ethical approval that reflected the new management of the Registry by Alfred Health in February 2017. Patient recruitment is by the specialist CF centres and data collection is generallysubmitted by most sites by direct data entry using the ACFDR web–based interface, although increasingly electronic transmission of data from electronic medical records or other databases to and from the registry is being requested. The ACFDR provides a publicly–available Annual Report and Jurisdictional Reports. It also provides annual reports to centres regarding centre data trends and comparisons. The ACFDR data may also be accessed by or analysed andprovided to researchers and other interested parties, further information on which is available on page 40.

AB - The ACFDR is a long standing Registry which commenced in 1996. Since 1998 it has collected diagnostic and treatment data on over 90 percent of the population of cystic fibrosis (CF) 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. Patients diagnosed with CF are invited to participate in the Registry through their treating site. Data about a CF patient’s diagnosis, treatment and related complications are collected regularly with the aim to improve health service delivery and better understand the treatment of CF and outcomes for patients. The ACFDR dataset enables reporting in a manner generally consistent with other CF registries, such as in Europe, the United Kingdom and the United States.Funded by Cystic Fibrosis Australia (CFA), as of September 2016, the ACFDR is managed by Monash University, Melbourne under a shared data custodianship arrangement. The Registry is actively supported by a multidisciplinary Steering Committee, and project-related subcommittees. The composition of the current ACFDR Steering Committee is listed on page 44. The role of the Steering Committee is to lead the strategic direction of the ACFDR, to review requests for access to ACFDR data, to develop and review relevant ACFDR policies and procedures, and to review the quality of outputs from the Registry.The ACFDR conforms to the national operating principles for clinical quality registries, as setout by the Australian Commission of Safety and Quality in Healthcare (ACSQHC). It received ethical approval that reflected the new management of the Registry by Alfred Health in February 2017. Patient recruitment is by the specialist CF centres and data collection is generallysubmitted by most sites by direct data entry using the ACFDR web–based interface, although increasingly electronic transmission of data from electronic medical records or other databases to and from the registry is being requested. The ACFDR provides a publicly–available Annual Report and Jurisdictional Reports. It also provides annual reports to centres regarding centre data trends and comparisons. The ACFDR data may also be accessed by or analysed andprovided to researchers and other interested parties, further information on which is available on page 40.

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Ruseckaite R, Ahern S, Ranger T, Tacey MA, Dean JT, Gardam M et al. Australian Cystic Fibrosis Data Registry Annual Report 2016. Melbourne, Australia: Monash University, 2018. 45 p.