Part,  Chapter, Paragraph

 1   II,     5.  2.  2    |            2007) and population-based registers for morbidity data; WHO-HFA
 2   II,     5.  2.  3    |             existing population based registers in Europe adopt different
 3   II,     5.  2.  3    |        information varies and in most registers it is much less intensive
 4   II,     5.  2.  5    |          programmes, population-based registers and screening programmes.
 5   II,     5.  2.  7    |      cerebrovascular population-based registers in Europe: are morbidity
 6   II,     5.  4.  2    |             Some of the best diabetes registers in Europe have adopted innovative
 7   II,     5.  4.  2    |              programs and/or diabetes registers only cover those diagnosed
 8   II,     5.  4.  2    |             population-based diabetes registers represents an obvious solution
 9   II,     5.  4.  2    |         exchange across collaborating registers in Europe (Carinci et al
10   II,     5.  4.  2    |             al 2006).~In other cases, registers are client-based, i.e. they
11   II,     5.  4.  2    |               clinician.~Client-based registers may provide valuable information
12   II,     5.  4.  2    |              information on diabetes.~Registers may become the most accurate
13   II,     5.  4.  2    |               there are sophisticated registers in place. Indeed, this fact
14   II,     5.  4.  4    |              the absence of validated registers), but also prone to differential
15   II,     5.  4.  7    |               among regional diabetes registers. The goal of the project
16   II,     5.  4.  7    |         directly by regional diabetes registers, based upon fully documented
17   II,     5.  4.  8    |          Benedetti M (2005), Diabetes registers and prevention strategies:
18   II,     5.  5.  1    |                            5.5.1.2.1. Registers~ ~There are problems in
19   II,     5.  5.  1    |               from hospital discharge registers, not only because coding
20   II,     5.  5.  1    |               from hospital discharge registers and annual data collections
21   II,     5.  5.  3    |               available from hospital registers and practitioners. Hospital
22   II,     5.  5.  3    |               practitioners. Hospital registers and information from practitioners,
23   II,     5.  5.  3    |         PR-SP-MS and PP-MS.~ ~MS case registers in ”Europe”~Population-based
24   II,     5.  5.  3    |             use of multiple sclerosis registersEDMUS. Ann Neurol 36(suppl):
25   II,     7.  3.  4    |               in the available injury registers is not without controversy
26   II,     7.  5        |           hospitalizations (discharge registers), surveillance of external
27   II,     8.  2.  1    |               those patients on their registers who have intellectual disabilities,
28   II,     8.  2.  1    |            limited sensitivity of the registers, especially towards mild
29   II,     9            |         supplement congenital anomaly registers to determine numbers. Trends
30   II,     9.  1.  1    |        derived from civil and medical registers of births and deaths, are
31   II,     9.  1.  1    |        networks of condition-specific registers.~ ~ ~(C=core, R=recommended,
32   II,     9.  1.  1    |        international networks of data registers such as SCPE (European Cerebral
33   II,     9.  1.  1    |          criteria used by surveys and registers. To overcome these difficulties,
34   II,     9.  1.  1    |            cerebral palsy surveys and registers, SCPE (Surveillance of Cerebral
35   II,     9.  1.  1    |              with fewer mild cases in registers from the Southern part of
36   II,     9.  1.  1    |       Southern part of Europe than in registers from the Northern part of
37   II,     9.  1.  1    |            cerebral palsy surveys and registers. Dev Med Child Neurol 2000;
38   II,     9.  1.  2    |            through congenital anomaly registers, and the focus of this section.
39   II,     9.  1.  2    |           focus of this section. Many registers also include cases diagnosed
40   II,     9.  1.  2    |        included in congenital anomaly registers, but are not included here.
41   II,     9.  1.  2    |   population-based congenital anomaly registers, using multiple sources
42   II,     9.  1.  2    |                There are currently 38 registers in 20 countries (see Table
43   II,     9.  1.  2    |            countries with established registers of congenital anomalies
44   II,     9.  1.  2    |            national births covered by registers in each country is shown
45   II,     9.  1.  2    |            Europe.~ ~Collaboration of registers within a European network
46   II,     9.  1.  2    |            current congenital anomaly registers. The data are limited with
47   II,     9.  1.  2    |               Many congenital anomaly registers nevertheless now use HE/
48   II,     9.  1.  2    |                   Many of the EUROCAT registers belong to ICBDSR also, as
49   II,     9.  1.  2    |               well two EU non-EUROCAT registers in Czech Republic and Slovak
50   II,     9.  1.  2    |             as represented by EUROCAT registers, the live birth prevalence
51   II,     9.  1.  2    |         supplement congenital anomaly registers to determine numbers. Trends
52   II,     9.  1.  2    |              and regional funding for registers is insufficient and short-term.
53   II,     9.  1.  2    |           spent on congenital anomaly registers by European Union countries.
54   II,     9.  1.  2    | confidentiality (Busby et al, 2005c). Registers in some countries are currently
55   II,     9.  2.  3    |         Europe-wide data. Studies and registers are in the process of development,
56   II,     9.  3.  2    |      discharge data and medical birth registers to measure severe maternal
57   II,     9.  3.  2    |            cerebral palsy surveys and registers. Dev Med Child Neurol 2000;
58  III,    10.  2.  1(12)|    Drug-related deaths data come from registers of mortality, which may
59  III,    10.  4.  5    |            established inventories or registers of contaminated sites and
60  III,    10.  4.  5    |        national level, inventories or registers of contaminated sites represent
61  III,    10.  4.  5    |               of 2006, inventories or registers had been established in
62  III,    10.  5.  3    |               Member Statesnational registers or other national bodies
63   IV,    11.  1.  5    |             Sweden, voluntary quality registers were developed for health
64   IV,    11.  1.  5    |             as cited in Smith, 2004). Registers are based on clinical specialties -
65   IV,    11.  4        |              population or healthcare registers, surveys, epidemiologic
66   IV,    11.  5.  6    |           2003Recom 12 on organ donor registers~2003Recom 10 on xenotransplantation
67   IV,    11.  6.  4    |          whereas clinical records and registers are available only for some
68   IV,    12.  2        |          programmes, population-based registers and screening programmes.
69   IV,    12.  5        |            Population data)~- Disease registers (e. g. cancer, myocardial
70   IV,    13.  6.  2    |            with whom the whole family registers for primary care, ensuring