Patient registries for home oxygen research and evaluation

References

• Report of the Medical Research Council Working Party. Long term domiciliary oxygen therapy in chronic hypoxic cor pulmonale complicating chronic bronchitis and emphysema. Lancet. 1981;1(8222):681–686.6110912
   PubMed Web of Science ®Google Scholar
• Nocturnal Oxygen Therapy Trial Group. Continuous or nocturnal oxygen therapy in hypoxemic chronic obstructive lung disease: a clinical trial. Ann Intern Med. 1980;93(3):391–398.6776858
   PubMed Web of Science ®Google Scholar
• Cranston JM, Crockett AJ, Moss JR, Alpers JH. Domiciliary oxygen for chronic obstructive pulmonary disease. Cochrane Database Syst Rev. 2005;(4):CD001744.16235285
   PubMed Web of Science ®Google Scholar
• Ekstrom M, Ahmadi Z, Bornefalk-Hermansson A, Abernethy A, Currow D. Oxygen for breathlessness in patients with chronic obstructive pulmonary disease who do not qualify for home oxygen therapy. Cochrane Database Syst Rev. 2016;11:CD006429.27886372
   PubMed Web of Science ®Google Scholar
• Ameer F, Carson KV, Usmani ZA, Smith BJ. Ambulatory oxygen for people with chronic obstructive pulmonary disease who are not hypoxaemic at rest. Cochrane Database Syst Rev. 2014;(6):CD000238.24957353
   PubMed Web of Science ®Google Scholar
• Croxton TL, Bailey WC. Long-term oxygen treatment in chronic obstructive pulmonary disease: recommendations for future research: an NHLBI workshop report. Am J Respir Crit Care Med. 2006;174(4):373–378. doi:10.1164/rccm.200507-1161WS16614349
   PubMed Web of Science ®Google Scholar
• Croxton TL, Weinmann GG, Senior RM, Wise RA, Crapo JD, Buist AS. Clinical research in chronic obstructive pulmonary disease: needs and opportunities. Am J Respir Crit Care Med. 2003;167(8):1142–1149. doi:10.1164/rccm.200207-756WS12684252
   PubMed Web of Science ®Google Scholar
• Gershon AS, Jafarzadeh SR, Wilson KC, Walkey AJ; Clinical Knowledge from Observational Studies. Everything you wanted to know but were afraid to ask. Am J Respir Crit Care Med. 2018;198(7):859–867. doi:10.1164/rccm.201801-0118PP29733678
   PubMed Web of Science ®Google Scholar
• Lacasse Y, Tan AM, Maltais F, Krishnan JA. Home oxygen in chronic obstructive pulmonary disease. Am J Respir Crit Care Med. 2018;197(10):1254–1264. doi:10.1164/rccm.201802-0382CI29547003
   PubMed Web of Science ®Google Scholar
• Franklin KA, Gustafson T, Ranstam J, Strom K. Survival and future need of long-term oxygen therapy for chronic obstructive pulmonary disease–gender differences. Respir Med. 2007;101(7):1506–1511. doi:10.1016/j.rmed.2007.01.00917331710
   PubMed Web of Science ®Google Scholar
• Nishi SP, Zhang W, Kuo YF, Sharma G. Oxygen therapy use in older adults with chronic obstructive pulmonary disease. PLoS One. 2015;10(3):e0120684. doi:10.1371/journal.pone.012068425785586
   PubMed Web of Science ®Google Scholar
• Oba Y. Cost-effectiveness of long-term oxygen therapy for chronic obstructive disease. Am J Manag Care. 2009;15(2):97–104.19284806
   PubMed Web of Science ®Google Scholar
• Andersson A, Strom K, Brodin H, et al. Domiciliary liquid oxygen versus concentrator treatment in chronic hypoxaemia: a cost-utility analysis. Eur Respir J. 1998;12(6):1284–1289.9877478
   PubMed Web of Science ®Google Scholar
• Jodar-Sanchez F, Ortega F, Parra C, et al. Cost-utility analysis of a telehealth programme for patients with severe chronic obstructive pulmonary disease treated with long-term oxygen therapy. J Telemed Telecare. 2014;20(6):307–316. doi:10.1177/1357633X1454442125052387
   PubMed Web of Science ®Google Scholar
• Long-Term Oxygen Treatment Trial Research Group, Albert RK, Au DH, et al. A randomized trial of long-term oxygen for COPD with moderate desaturation. N Engl J Med. 2016;375(17):1617–1627. doi:10.1056/NEJMoa160434427783918
   PubMed Web of Science ®Google Scholar
• Kaur G, Smyth RL, Williamson P. Developing a survey of barriers and facilitators to recruitment in randomized controlled trials. Trials. 2012;13:218. doi:10.1186/1745-6215-13-21823171513
   PubMed Web of Science ®Google Scholar
• Treweek S, Mitchell E, Pitkethly M, et al. Strategies to improve recruitment to randomised controlled trials. Cochrane Database Syst Rev. 2010;(1):MR000013.
   Web of Science ®Google Scholar
• Lacasse Y, Bernard S, Maltais F. Eligibility for home oxygen programs and funding across Canada. Can Respir J. 2015;22(6):324–330. doi:10.1155/2015/28060426306331
   PubMed Web of Science ®Google Scholar
• Lacasse Y, Bernard S, Series F, et al. Multi-center, randomized, placebo-controlled trial of nocturnal oxygen therapy in chronic obstructive pulmonary disease: a study protocol for the INOX trial. BMC Pulm Med. 2017;17(1):8. doi:10.1186/s12890-017-0500-928069009
   PubMed Web of Science ®Google Scholar
• Gliklich R, Dreyer N, Leavy M, editors. Registries for Evaluating Patient Outcomes: A User’s Guide. 3rd ed. Rockville (MD): Agency for Healthcare Research and Quality; 2014.
   Google Scholar
• Lacasse Y, Daigle JM, Martin S, Maltais F. Validity of chronic obstructive pulmonary disease diagnoses in a large administrative database. Can Respir J. 2012;19(2):e5–e9. doi:10.1155/2012/26037422536584
   PubMed Web of Science ®Google Scholar
• Wilchesky M, Tamblyn RM, Huang A. Validation of diagnostic codes within medical services claims. J Clin Epidemiol. 2004;57(2):131–141. doi:10.1016/S0895-4356(03)00246-415125622
   PubMed Web of Science ®Google Scholar
• Dreyer NA, Garner S. Registries for robust evidence. JAMA. 2009;302(7):790–791. doi:10.1001/jama.2009.109219690313
   PubMed Web of Science ®Google Scholar
• Ekstrom M, Ahmadi Z, Larsson H, et al. A nationwide structure for valid long-term oxygen therapy: 29-year prospective data in Sweden. Int J Chron Obstruct Pulmon Dis. 2017;12:3159–3169. doi:10.2147/COPD.S14026429133978
   PubMed Web of Science ®Google Scholar
• Ringbaek TJ, Lange P. The impact of the Danish Oxygen Register on adherence to guidelines for long-term oxygen therapy in COPD patients. Respir Med. 2006;100(2):218–225. doi:10.1016/j.rmed.2005.04.02315932796
   PubMed Web of Science ®Google Scholar
• Ringbaek TJ, Seersholm N, Perch M, Iversen M, Lange P. Prognosis of patients with alpha1-antitrypsine deficiency on long-term oxygen therapy. Respir Med. 2014;108(8):1189–1194. doi:10.1016/j.rmed.2014.05.00124906692
   PubMed Web of Science ®Google Scholar
• Guyatt GH, Sackett DL, Cook DJ; Evidence-Based Medicine Working Group. Users’ guides to the medical literature. II. How to use an article about therapy or prevention. A. Are the results of the study valid? JAMA. 1993;270(21):2598–2601.8230645
   PubMed Web of Science ®Google Scholar
• Concato J, Shah N, Horwitz RI. Randomized, controlled trials, observational studies, and the hierarchy of research designs. N Engl J Med. 2000;342(25):1887–1892. doi:10.1056/NEJM20000622342250710861325
   PubMed Web of Science ®Google Scholar
• Mathes T, Buehn S, Prengel P, Pieper D. Registry-based randomized controlled trials merged the strength of randomized controlled trails and observational studies and give rise to more pragmatic trials. J Clin Epidemiol. 2018;93:120–127. doi:10.1016/j.jclinepi.2017.09.01728951111
   PubMed Web of Science ®Google Scholar
• Ekstrom M. What can we learn about breathlessness from population-based and administrative health data? Curr Opin Support Palliat Care. 2016;10(3):223–227. doi:10.1097/SPC.000000000000022027489182
   PubMed Web of Science ®Google Scholar
• Lauer MS, D’Agostino RB Sr. The randomized registry trial–the next disruptive technology in clinical research? N Engl J Med. 2013;369(17):1579–1581. doi:10.1056/NEJMp131010223991657
   PubMed Web of Science ®Google Scholar
• Li G, Sajobi TT, Menon BK, et al. Registry-based randomized controlled trials- what are the advantages, challenges, and areas for future research? J Clin Epidemiol. 2016;80:16–24. doi:10.1016/j.jclinepi.2016.08.00327555082
   PubMed Web of Science ®Google Scholar
• Mathes T, Klassen P, Pieper D. No difference were found between effect estimates from conventional and registry-based randomized controlled trials. J Clin Epidemiol. 2018:pii: S0895-4356(18)30401-3 Epub ahead of print. doi:10.1016/j.jclinepi.2018.09.011
   Web of Science ®Google Scholar
• Woolf SH, Rothemich SF, Johnson RE, Marsland DW. Selection bias from requiring patients to give consent to examine data for health services research. Arch Fam Med. 2000;9(10):1111–1118.11115216
   PubMedGoogle Scholar
• Guyatt GH, McKim DA, Austin P, et al. Appropriateness of domiciliary oxygen delivery. Chest. 2000;118(5):1303–1308.11083678
   PubMed Web of Science ®Google Scholar
• Bohensky MA, Jolley D, Sundararajan V, et al. Data linkage: a powerful research tool with potential problems. BMC Health Serv Res. 2010;10:346. doi:10.1186/1472-6963-10-30221176171
   PubMed Web of Science ®Google Scholar
• Kelman CW, Bass AJ, Holman CD. Research use of linked health data–a best practice protocol. Aust N Z J Public Health. 2002;26(3):251–255.12141621
   PubMed Web of Science ®Google Scholar