Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

doi:10.1186/s13023-016-0389-z

. 2016 Apr 18:11:42.

doi: 10.1186/s13023-016-0389-z.

Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

K Casamento¹, A Laverty², M Wilsher³, J Twiss⁴, E Gabbay⁵, I Glaspole^{6

7}, A Jaffe^{8

9}; On behalf the Pulmonary Interstitial Vascular Organisational Taskforce (PIVOT) of Lung Foundation Australia

Affiliations

¹ Sydney Children's Hospitals Network, Sydney, Australia. Frauleinkarly@gmail.com.
² Great Ormond Street Hospital for Children NHS Foundation Trust, London, England.
³ Auckland District Health Board, Auckland, New Zealand.
⁴ Starship Children's Health, Grafton, Auckland, New Zealand.
⁵ Institute for Health Research, University of Notre Dame, Fremantle, WA, Australia.
⁶ Alfred Hospital, Melbourne, Australia.
⁷ Monash University, Melbourne, Australia.
⁸ School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia.
⁹ Department of Respiratory Medicine, Sydney Children's Hospital Randwick, Sydney, NSW, Australia.

PMID: 27090393
PMCID: PMC4835874
DOI: 10.1186/s13023-016-0389-z

Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

K Casamento et al. Orphanet J Rare Dis. 2016.

. 2016 Apr 18:11:42.

doi: 10.1186/s13023-016-0389-z.

Authors

Affiliations

¹ Sydney Children's Hospitals Network, Sydney, Australia. Frauleinkarly@gmail.com.
² Great Ormond Street Hospital for Children NHS Foundation Trust, London, England.
³ Auckland District Health Board, Auckland, New Zealand.
⁴ Starship Children's Health, Grafton, Auckland, New Zealand.
⁵ Institute for Health Research, University of Notre Dame, Fremantle, WA, Australia.
⁶ Alfred Hospital, Melbourne, Australia.
⁷ Monash University, Melbourne, Australia.
⁸ School of Women's and Children's Health, UNSW Medicine, University of New South Wales, Sydney, NSW, Australia.
⁹ Department of Respiratory Medicine, Sydney Children's Hospital Randwick, Sydney, NSW, Australia.

PMID: 27090393
PMCID: PMC4835874
DOI: 10.1186/s13023-016-0389-z

Abstract

Background: We investigated the feasibility of using an online registry to provide prevalence data for multiple orphan lung diseases in Australia and New Zealand.

Methods: A web-based registry, The Australasian Registry Network of Orphan Lung Diseases (ARNOLD) was developed based on the existing British Paediatric Orphan Lung Disease Registry. All adult and paediatric respiratory physicians who were members of the Thoracic Society of Australia and New Zealand in Australia and New Zealand were sent regular emails between July 2009 and June 2014 requesting information on patients they had seen with any of 30 rare lung diseases. Prevalence rates were calculated using population statistics.

Results: Emails were sent to 649 Australian respiratory physicians and 65 in New Zealand. 231 (32.4%) physicians responded to emails a total of 1554 times (average 7.6 responses per physician). Prevalence rates of 30 rare lung diseases are reported.

Conclusions: A multi-disease rare lung disease registry was implemented in the Australian and New Zealand health care settings that provided prevalence data on orphan lung diseases in this region but was limited by under reporting.

Keywords: Australia; Lung disease; New Zealand; Prevalence; Rare diseases; Registries.

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References

1. Therapeutic Goods Administration (TGA). Orphan Drugs Policy. 1998. Available at: https://www.tga.gov.au/orphan-drugs. Accessed January 12, 2015.
1. Orphanet. About rare diseases. 2012. Available at: http://www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?lng=EN. Accessed September 3, 2015.
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1. Jaffe A, Zurynski Y, Beville L, Elliott E. Call for a national plan for rare diseases. Journal of paediatrics and child health. 2010;46(1–2):2–4. doi: 10.1111/j.1440-1754.2009.01608.x. - DOI - PubMed

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[1] Therapeutic Goods Administration (TGA). Orphan Drugs Policy. 1998. Available at: https://www.tga.gov.au/orphan-drugs. Accessed January 12, 2015.

[2] Therapeutic Goods Administration (TGA). Orphan Drugs Policy. 1998. Available at: https://www.tga.gov.au/orphan-drugs. Accessed January 12, 2015.

[3] Orphanet. About rare diseases. 2012. Available at: http://www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?lng=EN. Accessed September 3, 2015.

[4] Orphanet. About rare diseases. 2012. Available at: http://www.orpha.net/consor/cgi-bin/Education_AboutRareDiseases.php?lng=EN. Accessed September 3, 2015.

[5] Dawkins HJS, Molster CM, Youngs LM, O’Leary PC. Awakening Australia to Rare Diseases: symposium report and preliminary outcomes. Orphanet Journal of Rare Diseases. 2011;6(1):57. doi: 10.1186/1750-1172-6-57. - DOI - PMC - PubMed

[6] Dawkins HJS, Molster CM, Youngs LM, O’Leary PC. Awakening Australia to Rare Diseases: symposium report and preliminary outcomes. Orphanet Journal of Rare Diseases. 2011;6(1):57. doi: 10.1186/1750-1172-6-57. - DOI - PMC - PubMed

[7] Zurynski Y, Frith K, Leonard H, Elliott E. Rare childhood diseases: how should we respond? Archives of disease in childhood. 2008;93(12):1071–4. doi: 10.1136/adc.2007.134940. - DOI - PubMed

[8] Zurynski Y, Frith K, Leonard H, Elliott E. Rare childhood diseases: how should we respond? Archives of disease in childhood. 2008;93(12):1071–4. doi: 10.1136/adc.2007.134940. - DOI - PubMed

[9] Jaffe A, Zurynski Y, Beville L, Elliott E. Call for a national plan for rare diseases. Journal of paediatrics and child health. 2010;46(1–2):2–4. doi: 10.1111/j.1440-1754.2009.01608.x. - DOI - PubMed

[10] Jaffe A, Zurynski Y, Beville L, Elliott E. Call for a national plan for rare diseases. Journal of paediatrics and child health. 2010;46(1–2):2–4. doi: 10.1111/j.1440-1754.2009.01608.x. - DOI - PubMed

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Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

Affiliations

Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience

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