Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review

Ruseckaite, Rasa; Mudunna, Chethana; Caruso, Marisa; Ahern, Susannah

doi:10.1186/s12955-023-02155-5

Table 1 Registry characteristics. Follow up point t0 is the reported baseline time point or time of intervention as specified in the article or report. Follow up point t1 is from 0 to 1 year, follow up point t2 is from 1 to < 2 years, follow up point t3 is from 2 to < 5 years, follow up point t4 is from 5 to < 10 years and follow up point t5 is from 10 + years

From: Response rates in clinical quality registries and databases that collect patient reported outcome measures: a scoping review

Source of Information	Registry	Condition	Country	Mode of Administration	No of reminders	RR (%) at follow up points						Total follow up (years)	Change in RR (%/year)
Source of Information	Registry	Condition	Country	Mode of Administration	No of reminders	t0	t1	t2	t3	t4	t5	Total follow up (years)	Change in RR (%/year)
Annual Report (2021) [41]	AOANJRR	Arthroplasty	Australia	Electronic	1	66.7	61.5	NA	NA	NA	NA	0.5	-10.5
Heo et al. (2019) [42], Churches et al. (2018) [43]	ACORN	Arthroplasty	Australia	Paper, phone	7	86.4	74	NA	NA	NA	NA	NA	NA
Rolfson et al. (2011) [44]	WRHA Joint Replacement	Arthroplasty	Canada	Paper	0	75	NA	NA	NA	NA	NA	NA	NA
Annual Report (2020–2021) [45]	VOTOR	Arthroplasty	Australia	Phone	NS	85	80	76	NA	NA	NA	2	-4.5
Annual Report (2022) [46]	Australian & New Zealand Hip Fracture Registry	Arthroplasty	Australia & New Zealand	NA	NA	NA	53	NA	NA	NA	NA	1	-12
Annual Report 2021–2022 [41]	Sydney Orthopaedic Foot & Ankle Research Institute Clinical Quality	Arthroplasty	Australia	NA	NA	78	66	NA	NA	NA	NA	0.33	NA
Scholes et al. (2023) [47]	PRULO	Arthroplasty	Australia	NA	NA	72	NA	NA	NA	NA	NA	NA	NA
Galea et al. (2020) [48]	DHAR	Arthroplasty	Denmark	Electronic	2	70	62	68	68	NA	NA	2	-1
Mechlenburg et al. (2020) [49]	DSR	Arthroplasty	Denmark	Electronic, paper	NS	93	NA	62	NA	NA	NA	1	-31
Rolfson et al. (2016) [50]	RIPO	Arthroplasty	Italy	Electronic	NS	30	NA	80	NA	NA	NA	1	50
Rolfson et al. (2016) [50]	LAR	Arthroplasty	Lithuania	Phone	0	100	60	NA	NA	NA	NA	0.5	-80
Most et al. (2022) [51]	LROI	Arthroplasty	Netherlands	Electronic, paper	0	38	50	38	NA	NA	NA	1	0
Rolfson et al. (2016) [50], Annual Report (2021) [24]	NZACL	Arthroplasty	New Zealand	Electronic, paper	> 1	100	86	80	86	NA	NA	2	-7
Rolfson et al. (2016) [50], Annual Report (2021) [52]	NZJR	Arthroplasty	New Zealand	Paper	0	NA	72.5	NA	NA	NA	NA	0.5	NA
Annual Report (2022) [53]	NAR	Arthroplasty	Norway	NS	NS	98	NA	80	NA	NA	NA	1	-18
Bartels et al. (2018) [54], Kristensen et al. (2017) [55], Gjertson et al. (2008) [56], Annual Report (2021) [57]	NHFR	Arthroplasty	Norway	Paper	0	28.2	57	53	NA	NA	NA	1	24.8
Ulstein et al. (2018 ) [58], Annual Report (2021) [53]	NKLR	Arthroplasty	Norway	Paper	1	NA	NA	NA	57.5	52.1	52	10	NA
Goh et al. (2021) [59]	Singapore Institutional Joint Registry	Arthroplasty	Singapore	NS	NS	100	89	NA	72	NA	NA	2	-14
SAR Annual Report (2021) [60]	SAR	Arthroplasty	Sweden	Electronic, paper	1	85.5	NA	82.5	NA	NA	NA	1	-3
Ulstein et al. (2018) [58], Annual Report (2019) [61]	Swedish Knee Ligament Register	Arthroplasty	Sweden	Electronic, paper	1	60	NA	55	50	45	40	10	-2
Coster et al. (2020) [62]	Swefoot	Arthroplasty	Sweden	Electronic, Paper	1	75	NA	72	NA	NA	NA	1	-3
Joelson et al. (2021) [63]	Swespine	Arthroplasty	Sweden	Electronic, Paper	NS	94	NA	75	65	NA	NA	2	-14.5
Kamrad et al. (2017) [64]	SwedAnkle	Arthroplasty	Sweden	Paper	NS	NA	55	76	30	NA	NA	2	NA
Rolfson et al. (2016) [50], Annual Report (2010) [65]	Geneva Hip Arthroplasty Registry	Arthroplasty	Switzerland	Electronic, paper, phone	2	77	NA	65	NA	76.9	70.8	10	-0.6
Maempel (2018) [66], Annual Report (2022) [67]	NAHR	Arthroplasty	UK	Electronic, paper, phone	2	96.5	50	40	7.5	NA	NA	2	-44.5
Annual Report (2021) [68]	UK National Joint Registry	Arthroplasty	UK	Electronic, paper	0	51.7	35	NA	11%	29.9	NA	5	-4.4
Annual Report (2015) [69]	UK NLR	Arthroplasty	UK	Electronic, paper	> 1	61.3	47	42	33	NA	NA	2	-14.1
Patel et al. (2015) [70]	CJRR (California)	Arthroplasty	USA	Electronic, paper, phone	NS	30.2	10	18.1	NA	NA	NA	1	-11.9
Randsborg et al. (2022) [71]	HSS ACL Registry	Arthroplasty	USA	NS	NS	31	NA	NA	31	51.2	NA	7.2	2.8
Lyman (2018) [72]	HSS Joint Replacement Registry	Arthroplasty	USA	Electronic	NS	80	NA	NA	81	NA	NA	2	0.5
Annual Report (2021) [73]	AJRR	Arthroplasty	USA	Electronic, paper	NS	25	NA	27.8	NA	NA	NA	1	2.8
Rolfson et al. (2016) [50]	FORCE TJR	Arthroplasty	USA	NS	NS	82.5	82.5	NA	NA	NA	NA	0.5	0
Rolfson et al. (2016) [50]	Michigan Arthroplasty Registry	Arthroplasty	USA	NS	NS	32	12	NA	NA	NA	NA	1	-20
Annual Report (2020) [74]	PCOR-ANZ	Cancer	Australia	Electronic, paper, phone	NS	57	NA	57%	NA	NA	NA	1	0
Rechtman et al. (2022) [29], Annual Report (2020) [74]	PCOR-VIC	Cancer	Australia	Electronic, paper, phone	> 1	98.5	NA	75	75	NA	NA	2	-11.8
Annual Report (2020) [74]	PCOR-QLD	Cancer	Australia	Paper	NS	NA	49	NA	NA	NA	NA	1	NA
Annual Report (2020) [74]	PCOR-ACT	Cancer	Australia	Electronic, paper, phone	NS	NA	62	NA	NA	NA	NA	1	NA
Annual Report (2020) [74]	PCOR-NSW	Cancer	Australia	Electronic, paper, phone	NS	NA	48	NA	NA	NA	NA	1	NA
Annual Report (2020) [74]	PCOR-NT	Cancer	Australia	Paper	NS	NA	39	NA	NA	NA	NA	1	NA
Annual Report (2020) [74]	PCOR-NZ	Cancer	Australia	Electronic, paper	NS	NA	68	NA	NA	NA	NA	1	NA
Annual Report (2020) [74]	PCOR-SA	Cancer	Australia	Paper	NS	NA	33	NA	NA	NA	NA	1	NA
Annual Report (2020) [74]	PCOR-TAS	Cancer	Australia	Electronic, paper, phone	NS	NA	44	NA	NA	NA	NA	1	NA
Ettridge et al. (2021) [75]	SAPCCOC Registry	Cancer	Australia	Paper	NS	NA	75	60	57	NA	NA	2	NA
Skandarajah et al. (2021) [76]	VCR	Cancer	Australia	Paper	1	45.6	NA	47.3	48.1	41.5	NA	5	-0.8
Sztankay et al. (2019) [27]	aMYELOIDr	Cancer	Austria	Electronic	NS	99	94	NA	NA	NA	NA	NA	NA
Vasquez et al. (2020) [77]	APCaRI Registry & Biorepository	Cancer	Canada	Electronic, paper	NS	77	NA	NA	NA	NA	NA	NA	NA
Joachim et al. (2018) [78]	MCR	Cancer	Caribbean	Electronic, paper	1	85	NA	NS	NS	70	NA	5	NA
Rose et al. (2020) [79]	DBCG Registry	Cancer	Denmark	Electronic	1	60	NA	NA	NA	48.3	NA	5	-2.3
Bronserud et al. (2019) [80]	DLCR	Cancer	Denmark	Electronic, paper	2	NA	50.4	48.9	NA	NA	NA	1	NA
Nguyen-Nielsen et al. (2016) [81]	DAPROCAdata	Cancer	Denmark	Electronic, paper	NS	26	NA	92	NA	NA	NA	1	66
Wallwiener et al. (2017) [82]	PRAEGNANT Register	Cancer	Germany	Electronic	0	57	33	NA	NA	NA	NA	0.5	0
Lovegrove et al. (2020) [83]	HEAT Registry	Cancer	Global	Electronic	NS	72.6	25.4	NA	NA	NA	NA	NA	NA
Gupta et al. (2021) [84]	PanCAN	Cancer	Global	Electronic	NS	77.6	NA	75	NA	NA	NA	1	-2.6
Van Kleef et al. (2021) [85]	NCR	Cancer	Netherlands	Electronic, paper	0	85	14.8	NA	NA	NA	NA	0.02	[Outlier]
Ramsey et al. (2019) [86]	PROFILES Registry	Cancer	Netherlands	Electronic, paper	1	73	NA	83	81.3	NA	NA	4	2
Christiansen et al. (2019) [87]	CRN	Cancer	Norway	Electronic	1	97	91	NA	NA	NA	NA	0.3	-24
Amit et al. (2019) [88]	Oropharynx Cancer Registry PROF Core	Cancer	USA	Paper	1	84	NA	NA	NA	NA	NA	NA	NA
Hoffman et al. (2020) [23]	CaPSURE	Cancer	USA	Paper	NS	100	97	94	85	77	NA	5	-4.6
Barker et al. (2018) [89], Annual Report (2020) [90]	VCOR	Cardiac	Australia	Electronic, phone	2	NA	72	NA	NA	NA	NA	0.08	NA
Ikemura et al. (2019) [25]	KiCS-AF registry (Cohort Study)	Cardiac	Japan	Electronic, paper	NS	97	NA	91.7	NA	NA	NA	1	-5.3
Steingerg et al. (2020) [91], Piccini et al. (2011 ) [28]	ORBIT-AF	Cardiac	USA	Electronic	NS	94	80	67	NA	NA	NA	1	-27
Bradley et al. (2019) [92]	PALM Registry	Cardiac	USA	Electronic	0	93	NA	NA	NA	NA	NA	NA	NA
Arnold et al. (2022) [93]	STS, ACC & TVT Registry	Cardiac	USA	NS	NS	25	25	NA	NA	NA	NA	0.08	0
Annual report (2020–2021) [94]	VACAR	Cardiac	Australia	Phone	3	NA	85	NA	NA	NA	NA	1	NA
Alarcon et al. (2020) [22]	COREXH Registry	Chronic Disease	Columbia	Paper	NS	99	81	64	NA	NA	NA	1	-35
Apfelbacher et al. (2019) [95]	CARPE	Chronic Disease	Germany	Electronic, paper	NS	NA	87	69	49	22	NA	NA	NA
Kreuter et al. (2017) [96]	INSIGHTS-IPF Registry	Chronic Disease	Germany	Electronic	NS	84.5	84.5	NA	NA	NA	NA	1	NA
Younossi et al. (2021) [97], Hardy (2020) [98]	Global NASH & NAFLD Registry	Chronic Disease	Global	Electronic	NS	50	NA	14	NA	NA	NA	0.3	-96
Ahmed et al. (2015) [99]	CARE	Chronic Disease	Netherlands	Electronic, paper	1	90	85	NA	82	NA	NA	2	-4
Verket et al. (2018) [100]	ORAR	Chronic Disease	Norway	Paper	0	71	NA	NA	75	59	61	15	-0.7
Nimmo et al. (2018) [9]	SRR	Chronic Disease	Scotland	Paper	0	NA	44	NA	NA	NA	NA	NA	NA
Mellgren et al. (2020) [101]	InfCareHiv	Chronic Disease	Sweden	Electronic, paper	0	NA	NA	44	NA	NA	NA	1	NA
Svedbo (2018) [102]	Swedish NDR	Chronic Disease	Sweden	Paper	1	NA	61	NA	NA	NA	NA	NA	NA
Hejike et al. (2020) [103], Hejike et al. (2021) [104]	KLURING	Chronic Disease	Sweden	NS	NS	100	76	90	72	49	NA	5	-10.2
Hofstedt et al. (2019) [105]	SRQ	Chronic Disease	Sweden	Electronic, paper	0	NA	88	NA	NA	NA	NA	NA	NA
Twigg et al. (2017) [106]	YEAR	Chronic Disease	UK	Paper	NS	92	74	74	NA	NA	NA	1	-18.5
Callis Duffin et al. (2021) [107], Mease et al. (2017) [108], Strober et al. (2019) [109]	Corrona PsA, SpA Registry	Chronic Disease	USA	Paper	NS	NA	99	NA	NA	NA	NA	NA	NA
Yun et al. (2020) [110]	Arthritis Power Registry	Chronic Disease	USA	Electronic	NS	NA	33	NA	NA	NA	NA	NA	NA
Case et al. (2020) [111]	IPF-PRO Registry	Chronic Disease	USA	NS	NS	76	NA	NA	NA	NA	NA	NA	NA
Braaten et al. (2019) [112]	UPI Arthritis Registry	Chronic Disease	USA	NS	NS	NA	58	NA	NA	NA	NA	NA	NA
Feldon et al. (2017) [113]	MYOVISION	Chronic Disease	USA & Canada	Electronic, paper, phone	1	91	NA	NA	NA	NA	NA	NA	NA
Zimmerman et al. (2019) [114]	Swedish National Quality Registry for Hand Surgery	General Surgery	Sweden	Electronic, paper	0	33	27	24	NA	NA	NA	1	-9
Hallenstal et al. (2021) [115]	NTSRS	General Surgery	Sweden	Electronic	0	NA	44	NA	NA	NA	NA	0.5	NA
Alvarez et al. (2021) [116], Waljee et al. (2015) [117]	MBSC	General Surgery	USA	Electronic	3	36	36	NA	NA	NA	NA	1	0
Helsten et al. (2016) [118]	SATISFY-SOS Registry	General Surgery	USA	Electronic, paper, phone	2	NA	62	71	NA	NA	NA	1	NA
Verket et al. (2018) [100]	Norwegian Endometriosis Association	Gynaecological Surgery	Norway	Paper	0	NA	25	25	NA	NA	NA	NA	NA
Annual Report 2021 [119]	ABDR	General Surgery	Australia	NS	NS	NA	40	40	38	NA	NA	5	-0.2
Melkemichel (2020) [120], Lundstrom et al. (2018) [121], Jakobsson et al. (2022) [122]	SHR	Gynaecological Surgery	Sweden	Paper	1	NA	NA	71	NA	NA	NA	1	NA
Madsen et al. (2017) [123], Nussler et al. (2022) [124]	GynOp	Gynaecological Surgery	Sweden	Paper	0	NA	90	85	NA	NA	NA	1	NA
Bradley et al. (2021) [125]	PFDR-R	Gynaecological Surgery	USA	Electronic, paper	NS	49	NA	NA	NA	NA	NA	NA	NA
Poulsen et al. (2018) [126]	National Patient Register	Miscellaneous	Denmark	Paper	1	NA	79	NA	NA	NA	NA	NA	NA
Wall et al. (2020) [127], Vuillermin (2021) [128]	CoULD Registry	Miscellaneous	Global	Electronic	0	NA	97	NA	NA	NA	NA	NA	NA
Ruiter et al. (2021) [129]	Dutch-Belgian Registry for NMJ Disorders	Miscellaneous	Netherlands & Belgium	Electronic	0	88	49	NA	NA	NA	NA	NA	NA
Moller et al. (2022) [130], Lagergren et al. (2020) [131], Juto et al. (2017) [132]	SFR	Miscellaneous	Sweden	Paper	1	55	NA	41	NA	NA	NA	1	-14
Lutz et al. (2020) [133]	ATI Patient Outcomes Registry	Miscellaneous	USA	NS	NS	54	NA	NA	NA	NA	NA	NA	NA
Pearl et al. (2020) [21]	ARMR	Miscellaneous	USA	Paper	0	99.5	NA	NA	NA	NA	NA	NA	NA
Annual Report (2020–2021) [134]	ADNeT	Miscellaneous	Australia	Paper	1	53	NA	NA	NA	NA	NA	NA	NA
Seefried et al. (2020) [20]	Global HPP Registry	Rare disease	Global	Electronic	NS	68	NA	NA	NA	NA	NA	NA	NA
Morris et al. (2018) [19]	FSHD Patient Registry	Rare disease	UK	Electronic	1	NA	89	NA	NA	NA	NA	NA	NA
Tosi et al. (2019) [16]	BBDC Contact Registry	Rare disease	USA	Electronic	NS	NA	87	NA	NA	NA	NA	NA	NA
Eng et al. (2021) [18]	EBCare Registry	Rare disease	USA	Electronic	0	19.5	NA	NA	NA	NA	NA	NA	NA
Annual Report (2022) [135]	ASR	Spine	Australia	Electronic, phone	3	85	82	83	78	NA	NA	2	-3.5
Andersen et al. (2018) [136]	DaneSpine	Spine	Denmark	Paper	1	90	NA	86	NA	NA	NA	1	-4.5
Matsumoto et al. (2021) [137]	PSSG & GSSG	Spine	Global	Electronic, paper	0	42	NA	43	64.9	NA	NA	2	11.5
Mannion et al. (2018) [138], Morris et al. (2018) [19], Sunderland et al. (2021) [139]	EUROSPINE Spine Tango Registry	Spine	Global	Electronic, paper	1	49	66	73.3	54	NA	NA	2	2.5
Austevoll et al. (2019) [140]	NORspine	Spine	Norway	Paper	0	NA	79	81	NA	NA	NA	1	NA
Zakaria et al. (2019) [141]	MSSIC	Spine	USA	Electronic, paper, phone	2	72	55	49	NA	NA	NA	1	-23
Theisen et al. (2020) [142]	NBRG SCI Registry	Spine	USA	NS	NS	92	NA	NA	NA	NA	NA	NA	NA
Wilkerson et al. (2022) [143]	NeuroPoint QOD	Spine	USA	NS	NS	67	82	70	NA	NA	NA	1	2.6
Annual Report (2020) [144]	AuSCR	Stroke	Australia	Paper, phone	2	92	65	NA	NA	NA	NA	0.5	-54
Palmcrantz et al. (2018) [145]	RisStroke	Stroke	Sweden	Paper, phone	0	NA	81	79	NA	NA	NA	1	NA
Turner et al. (2019) [146], Annual Report (2020–2021) [147]	BRANZ	Trauma	ANZ	Paper, phone	4	71	55	40	21	NA	NA	2	-25
Turner et al. (2019) [146]	VSTR	Trauma	Australia	Phone	NS	NA	87	88	86	NA	NA	2	NA
Stamer et al. (2021) [148], Zaslansky et al. (2015) [149]	PAIN OUT Infant	Trauma	Global	Electronic	NS	20.6	NA	NA	NA	NA	NA	NA	NA
Van der Vliet et al. (2019) [150]	DNTR	Trauma	Netherlands	Paper, phone	2	NA	75	98	NA	NA	NA	1	23
Wihlke et al. (2021) [151]	SweTrau	Trauma	Sweden	Paper, phone	1	NA	78	68	NA	NA	NA	1	NA
Kallman et al. (2020) [26]	SQRP	Trauma	Sweden	Electronic, paper	NS	99	86	55	NA	NA	NA	1	-44
Turner et al. (2019) [146]	TARN	Trauma	UK	Paper	NS	61	88	NA	NA	NA	NA	NA	NA
Rolfson et al. (2011) [44]	CERTs Registry	Trauma	USA	NS	NS	80	NA	NA	NA	NA	NA	NA	NA
Turner et al. (2019) [146], Rios-Diaz et al. (2017) [152]	FORTE project	Trauma	USA	Phone	NS	NA	45	42	NA	NA	NA	1	NA
Amtman et al. (2017) [153]	NIDILRR BMS National Database	Trauma	USA	Electronic, paper, phone	NS	82	72	63	54	NA	NA	2	-14

ABDR: The Australian Breast Device Registry, ACC: American College of Cardiology, ACL: Anterior Cruciate Ligament, ACORN: Arthroplasty Clinical Outcomes Registry, National,ADNet: Australian Dementia Network Registry, AJRR: American Joint Replacement Registry, aMYELOIDr: Austrian Myelome Registry, AOANJRR: Australian Orthopaedic Association National Joint Replacement Registry, APCaRI: Alberta Prostate Cancer Research Initiative, ARMR: American Registry for Migraine Research ASR: Australian Spine Registry, AuSCR: Australian Stroke Registry, BBDC: Brittle Bone Disorders Consortium, BMS: Burn Model System, BRANZ: The Burns Registry of Australia and New Zealand, CaPSURE: Prostate Strategic Urologic Research Endeavor prostate cancer registry, CARE: Dutch Chronic Pancreatitis Registry, CERTs: Centre for Education and Research on Therapeutics, COREXH: Expanded Haemodialysis Registry Protocol in Colombia, CoULD: The Congenital Upper Limb Difference, CRN: Cancer Registry in Norway, DaneSpine: Danish National Spine Database, DAPROCA data: Danish Prostate Cancer Database, DBCG: Danish Breast Cancer Cooperative Group, DHAR: Danish Hip Arthroplasty Registry, DLCR: Danish Lung Cancer Registry, DNTR: Dutch National Trauma Registry, EB: Epidermolysis Bullosa, DSR: Danish Shoulder Arthroplasty Registry; FORTE: Functional Outcomes and Recovery after Trauma Emergencies, FSHD: Facioscapulohumeral Dystrophy, GSSG: Growing Spine Study Group, GynOp: Swedish National Quality Register of Gynaecological Surgery, Heat: High Intensity Focused Ultrasound Evaluation and Assessment of Treatment, HPP: Hypophosphatasia, HSS: Hospital for Special Surgery, HSS: Hospital for Special Surgery, IPF-PRO: The Idiopathic Pulmonary Fibrosis Prospective Outcomes, KiCS- AF: Keio Interhospital Cardiovascular Studies-atrial fibrillation, KLURING: Clinical Lupus Register in North-Eastern Gothia, Sweden, LAR: Lithuanian Arthroplasty Registry, LROI: Dutch Arthroplasty Register, MBSC: Michigan Bariatric Surgery Collaborative, MCR: Martinique Cancer Registry, MSSIC: Michigan Spine Surgery Improvement Collaborative, NAFLD: Non-Alcoholic Fatty Liver Disease, NAHR: British Non-Arthroplasty Hip Register, NAR: Norwegian Arthroplasty Register, NASH: Non-Alcoholic Steatohepatitis, NBRG: Neurogenic Bladder Research Group, NCR: Netherlands Cancer Registry, NDR: National Diabetes Register, NHFR: Norwegian Hip Fracture Register, NIDILRR: National Institute on Disability, Independent Living, and Rehabilitation Research, NJM: Neuromuscular Junction, NKLR: Norwegian Knee Ligament Register, NLR: National Ligament Register, NORspine: Norwegian National Spine Registry, NTSRS: National Tonsil Surgery Register in Sweden, NZACL: New Zealand Anterior Cruciate Ligament Registry, NZJR: New Zealand Joint Registry, ORAR: Oslo Rheumatoid Arthritis Register, ORBIT-AF: Outcomes Registry for Better Informed Treatment of Atrial Fibrillation, PALM: Patient and Provider Assessment of Lipid Management, PanCAN: The Pancreatic Cancer Action Network, PCOR ACT: Prostate Cancer Outcomes Registry - Australian Capital Territory, PCOR-ANZ: Prostate Cancer Outcomes Registry - Australia and New Zealand, PCOR- NSW: Prostate Cancer Outcomes Registry – New South Wales, PCOR- NT: Prostate Cancer Outcomes Registry – Northern Territory, PCOR NZ: Prostate Cancer Outcomes Registry New Zealand, PCOR- QLD: Prostate Cancer Outcomes Registry - Queensland, PCOR SA: Prostate Cancer Outcomes Registry South Australia, PCOR TAS: Prostate Cancer Outcomes Registry - Tasmania, PCOR-VIC: Prostate Cancer Outcomes Registry Victoria, PFD-R: American Urogynecology Society’s Pelvic Floor Disorder Registry for Research, PROF: Patient Reported Outcomes and Function, PROF: Patient Reported Outcomes and Function, PsA: Psoriatic Arthritis, PSSG: Paediatric Spine Study Group, PRULO; Patient Registry of Upper Limb pathology Outcome, QOD: Quality Outcomes Database, RIPO: Register of the Orthopaedic Prosthetic Implants, RisStroke: Swedish National Stroke Register, SAPCCOC: South Australian Prostate Cancer Clinical Outcomes Collaborative, SAR: Swedish Arthroplasty Registry, SATISFY-SOS: Systematic Assessment and Targeted Improvement of Services Following Yearlong Surgical Outcomes Survey, SCI: Spinal Cord Injury, SFR: Swedish Fracture Register, SHR: Swedish Hernia Register, SpA: Spondyloarthritis, SQR: Swedish Rheumatology Quality Register, SQRP: Swedish Quality Registry for Pain Rehabilitation, SRR: Scottish Renal Registry, STS: Society of Thoracic Surgeons, SwedAnkle: The Swedish Ankle Registry, Swespine: Swedish National Spine Register, SweTrau: Swedish Trauma Register, TARN: Trauma Audit and Research Network, TVT :Transcatheter Valve Therapy, UK: United Kingdom, UPI: Utah Psoriasis Initiative, VACAR; Victorian Ambulance Cardiac Arrest Registry, VCOR: Victorian Cardiac Outcomes Registry, VCR: Victorian Cancer Registry, VOTOR: Victorian Orthopaedic Trauma Outcomes Registry, VSTR: Victorian State Trauma Registry, WRHA: Winnipeg Regional Health Authority, YEAR: Yorkshire Early Arthritis Register

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