116:"The use of joint registries has proven beneficial abroad. In Australia, regulators use such data to force manufacturers to justify why poorly performing hips or knees should remain available, and products have been withdrawn as a result. In Sweden several years ago, surgeons alerted by their national registry stopped using a badly flawed hip long before their American counterparts did. A few medical organizations in the USA, like Kaiser Permanente, operate their own registries to good effect and the Hospital for Special Surgery in New York has recently set up a registry. Experts say that the United States wastes billions of dollars annually on medical treatments which may not work. But the financial and human consequences are also large when evidence exists but is not collected."
165:(NCQA). These criteria, in order to avoid paper charts reviews are in most cases based on insurance claims. For example, for diabetes, HEDIS selects an eligible population based on age (18–75 years), continuous enrollment with a certain health insurer and certain "Events/diagnosis" from pharmacy data (electronic), insurance claims data (electronic) or from medical records. Pharmacy data is based on a list of medications prescribed for diabetes. Claims data is based on having two outpatient visits with a doctor or one inpatient hospital admission or one emergency room visit with the diagnosis of diabetes. Patients are excluded if they have
68:
in the US was $ 132 billion, and this was around 12% of the US medical budget. Diabetes accounts for 25% of the
Medicare budget. Given this, diabetes is one of the conditions targeted by registries. Diabetes is also amenable to this because there is a target population that can be defined according
124:
The cost-effectiveness of a disease registry is related with the cost-effectiveness of prevention of specific medical conditions. Increasing compliance through a registry with preventive measures like children vaccination or colonoscopy screening can actually be a cost-saving measure. "A mammogram
30:
In its simplest form, a disease registry could consist of a collection of paper cards kept inside "a shoe box" by an individual physician. Most frequently registries vary in sophistication from simple spreadsheets that only can be accessed by a small group of physicians to very complex databases
133:
Registries can be associated with pay-for-performance (P4P) quality based contracts for individual doctors, groups of doctors or even all doctors in a country. For example, the United
Kingdom, rewards physicians according to 146 quality measures related with 10 chronic diseases that are tracked
100:
products as well as the safety of drugs in specific populations. However, it is getting more and more common to use data of different healthcare and disease registries innovatively for different purposes such as for generating evidence for healthcare efficiency, market access planning and
78:
On a survey of 1040 US physician organizations published in
Journal of the American Medical Association, diabetes registries are used by 40.3%, asthma registries are used by 31.2% of physician organizations, CHF registries are used by 34.8% and depression registries are used by 15.7%.
57:
More than 130 million
Americans live with chronic diseases and chronic diseases account for 70% of all deaths in the US. "The medical care costs of people with chronic diseases account for more than 75% of the nation's $ 2 trillion medical care costs."
153:
Is the registry only updated centrally or can a physician update or correct it? For example, a physician does not want to get reminders from a registry regarding diabetes patients that died, moved to another state or left her/his
305:
DesRoches, Catherine M.; Campbell, Eric G.; Rao, Sowmya R.; Donelan, Karen; Ferris, Timothy G.; Jha, Ashish; Kaushal, Rainu; Levy, Douglas E.; Rosenbaum, Sara; Shields, Alexandra E.; Blumenthal, David (3 July 2008).
195:
International
Collaborative Gaucher Group (ICGG) Gaucher Registry is largest ongoing longitudinal international database that tracks demographic and clinical outcome data from patients with Gaucher disease
82:
Other tests like Pap smears are also useful to keep track in registries because there is evidence that when done annually in women of certain ages groups can detect and prevent cervical cancer.
145:
The quality of a disease registry is contingent on the quality of its data and all the processes involved in updating it and keeping its integrity. In every registry there is always a risk of "
559:
238:
470:
Hannan, Edward L.; Racz, Michael J.; Walford, Gary; Jones, Robert H.; Ryan, Thomas J.; Bennett, Edward; Culliford, Alfred T.; Isom, O. Wayne; Gold, Jeffrey P.; Rose, Eric A. (26 May 2005).
287:
49:
An electronic medical record keeps track of all the patients a doctor follows but a registry only keeps track of a small sub population of patients with a specific condition.
61:
Registries target certain conditions because medical expenses are unevenly distributed: most health care expenses are spent treating patients with a few chronic conditions.
198:
Vascular health ASsessment Of The hypertENSive patients (VASOTENS) Registry, the international registry for ambulatory blood pressure and arterial stiffness telemonitoring.
158:
125:
every 2 years for women aged 50–69 costs only about $ 9,000 per year of life saved. This cost compares favorably with other widely used clinical preventive services."
587:
266:
69:
to certain rules and there is evidence that certain tests like retina exams, LDL levels, HgbA1c levels can correlate with quality of care in diabetes.
162:
75:
Another example of disease registry is the New York State CABG Registry that tracks all cardiac bypass surgery performed in the state of New York.
72:
Because of the diabetes impact, New York City created a HbA1C Registry (NYCAR) to help health providers keep track of patients with diabetes.
23:
are collections of secondary data related to patients with a specific diagnosis, condition, or procedure, and they play an important role in
454:
291:
963:
767:
Doran, Tim; Fullwood, Catherine; Gravelle, Hugh; Reeves, David; Kontopantelis, Evangelos; Hiroeh, Urara; Roland, Martin (27 July 2006).
529:
137:
In the United States, Medicare also started a 1.5% P4P contract based on health measures that can be tracked by disease registries.
34:
They can provide health providers (or even patients) with reminders to check certain tests in order to reach certain quality goals.
157:
Most frequently, a list of patients with a certain condition (e.g. diabetes) is generated based on certain criteria. In the U.S.,
1050:
372:
173:. Despite the strict criteria it is possible for physicians to have patients on their registries that are not truly diabetic.
1055:
1040:
1045:
24:
882:
Newton, K. M.; Wagner, E. H.; Ramsey, S. D.; McCulloch, D.; Evans, R.; Sandhu, N.; Davis, C. (1999). "Redirecting".
110:
742:
347:
46:
that according to a recent survey are only used by 9% of small offices where almost half of the US doctors work.
43:
846:
630:
217:
146:
86:
864:
816:
511:
205:
452:
The NYC Hemoglobin A1C Registry (NYCAR) : Diabetes
Prevention and Control Program : NYC DOHMH
170:
27:
of pharmaceuticals. Registries are different from indexes in that they contain more extensive data.
651:
798:
686:
579:
451:
258:
166:
373:"The High Concentration of U.S. Health Care Expenditures: Research in Action, Issue 19, Chart 1"
899:
790:
724:
537:
493:
434:
329:
186:
Newborn
Screening (NBS) Connect Patient Registry for patients with inborn errors of metabolism
1010:
971:
891:
780:
714:
571:
483:
424:
319:
250:
458:
412:
189:
DuchenneConnect
Patient Registry for patients with Duchenne and Becker Muscular Dystrophy.
681:
530:"Cervical cancer screening guideline: October 2006. - National Guideline Clearinghouse"
895:
288:"ACP Observer, September 2005 - Patient registries: a key step to quality improvement"
1034:
802:
583:
376:
262:
703:"Does Preventive Care Save Money? Health Economics and the Presidential Candidates"
631:"From Concept to Reality: Putting Value-Based Health Care into Practice in Sweden"
472:"Long-Term Outcomes of Coronary-Artery Bypass Grafting versus Stent Implantation"
429:
308:"Electronic Health Records in Ambulatory Care — A National Survey of Physicians"
97:
652:"American Joint Replacement Registry - Improving orthopaedic care through data"
109:
Countries like
Australia, Britain, Norway, Sweden, and America have a national
701:
Cohen, Joshua T.; Neumann, Peter J.; Weinstein, Milton C. (14 February 2008).
149:". Issues that can affect a registry and its acceptance by a physician group:
201:
903:
794:
728:
497:
438:
333:
324:
307:
785:
768:
719:
702:
608:
488:
471:
65:
769:"Pay-for-Performance Programs in Family Practices in the United Kingdom"
629:
Larsson, Stefan; Lawyer, Peter; Silverstein, Martin B. (November 2010).
239:"The Value of Patient-Centered Registries in Phase IV Drug Surveillance"
96:
Patient registries are particularly useful for evaluating the safety of
746:
575:
560:"The value of patient-centred registries in phase IV drug surveillance"
351:
254:
397:
89:
and are defined and standardized by national organizations like the
917:
945:
931:
824:
90:
413:"Standards of Medical Care for Patients With Diabetes Mellitus"
512:"JAMA – The Latest Medical Research, Reviews, and Guidelines"
558:
McNeil, JJ; Piccenna, L; Ronaldson, K; et al. (2010).
237:
McNeil, JJ; Piccenna, L; Ronaldson, K; et al. (2010).
42:
Registries are less complex and simpler to set up than
31:
that are accessed online across multiple institutions.
992:
659:
682:"A call for a warning system on artificial joints"
192:PatientCrossroads – pan disease patient registries
411:Association, American Diabetes (1 January 2003).
159:Healthcare Effectiveness Data and Information Set
1011:"TREAT-NMD : List of registries by disease"
398:"DAGC.ORG - Diabetes Statistics - United States"
182:Below is a growing list of patient registries.
964:"Gaucher Disease - The ICGG Gaucher Registry"
8:
113:to track patients with artificial joints.
784:
718:
487:
428:
323:
161:(HEDIS) criteria are set annually by the
163:National Committee for Quality Assurance
348:"Chronic Diseases and Health Promotion"
229:
441:– via care.diabetesjournals.org.
85:Many of measures tracked are based on
7:
946:"Invitae - Patient Insights Network"
64:For example, the 2002 expenses with
53:Types of medical conditions tracked
141:Technical aspects of data tracking
14:
823:. 11 October 2017. Archived from
38:Versus electronic medical records
884:Journal of Clinical Epidemiology
993:"Home page - Vasotens Registry"
773:New England Journal of Medicine
707:New England Journal of Medicine
609:"RWD / RWE Guide - RemedyBytes"
476:New England Journal of Medicine
312:New England Journal of Medicine
1:
896:10.1016/S0895-4356(98)00161-9
743:"Chronic Disease - Overview"
680:Meier, Barry (2008-07-29).
430:10.2337/diacare.26.2007.S33
25:post marketing surveillance
1072:
111:joint replacement registry
105:Medical devices registries
44:electronic medical records
950:www.patientcrossroads.com
633:. Boston Consulting Group
129:Pay-for-performance (P4P)
218:Clinical trials registry
1051:Evidence-based medicine
206:neuromuscular disorders
147:garbage in, garbage out
87:evidence-based medicine
204:patient registries in
457:June 9, 2007, at the
325:10.1056/NEJMsa0802005
865:"NCQA > 404error"
847:"NCQA > 404error"
786:10.1056/NEJMsa055505
720:10.1056/NEJMp0708558
489:10.1056/NEJMoa040316
423:(suppl 1): s33–s50.
171:gestational diabetes
1056:Medical terminology
1041:Health care quality
968:www.gauchercare.com
1046:Health informatics
687:The New York Times
576:10.1007/bf03256826
255:10.1007/bf03256826
167:polycystic ovaries
120:Cost-effectiveness
101:pharmacovigilance
21:patient registries
534:www.guideline.gov
516:jama.ama-assn.org
482:(21): 2174–2183.
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1025:
1024:
1022:
1021:
1015:www.treat-nmd.eu
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1001:
1000:
989:
983:
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970:. Archived from
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827:on 18 March 2023
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134:electronically.
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459:Wayback Machine
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890:(3): 199–207.
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570:(5): 281–288.
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294:on 2012-07-31.
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249:(5): 281–288.
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590:on 2012-07-07
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540:on 2008-09-28
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417:Diabetes Care
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379:on 2008-07-09
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354:on 2011-07-26
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1018:. Retrieved
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987:
976:. Retrieved
972:the original
967:
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912:
887:
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869:www.ncqa.org
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851:www.ncqa.org
850:
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829:. Retrieved
825:the original
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751:. Retrieved
747:the original
737:
710:
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664:. Retrieved
660:the original
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635:. Retrieved
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613:. Retrieved
611:. 2023-02-21
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592:. Retrieved
588:the original
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542:. Retrieved
538:the original
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381:. Retrieved
377:the original
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356:. Retrieved
352:the original
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318:(1): 50–60.
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271:. Retrieved
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98:orphan drug
1035:Categories
1020:2018-06-13
978:2014-08-25
817:"Overview"
753:2008-07-09
666:2016-02-03
637:2011-07-06
615:2023-03-16
594:2011-06-17
544:2008-06-26
383:2008-06-26
358:2008-07-09
273:2011-06-17
224:References
564:Pharm Med
243:Pharm Med
202:TREAT-NMD
154:practice.
997:VASOTENS
904:10210237
803:22548030
795:16870916
729:18272889
656:ajrr.net
584:19091146
498:15917382
455:Archived
439:12502618
334:18565855
263:19091146
212:See also
178:Examples
169:or just
66:diabetes
831:26 June
17:Disease
932:"Home"
918:"Home"
902:
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727:
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437:
332:
261:
799:S2CID
580:S2CID
259:S2CID
900:PMID
833:2008
791:PMID
725:PMID
494:PMID
435:PMID
330:PMID
91:NCQA
892:doi
781:doi
777:355
715:doi
711:358
572:doi
484:doi
480:352
425:doi
320:doi
316:359
251:doi
19:or
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