List of challenges in obtaining high-quality data, its consequences, and recommendations for improvement.
| Challenges in obtaining high-quality data . | Problematic consequences . | Recommendations . |
|---|---|---|
| Limited availability of diagnostic equipment | Incomplete overview of kidney patients infected with the disease | Patient and professional kidney societies develop a common front and engage with national and European authorities to ensure adequate and equitable distribution of diagnostic equipment |
| Differential sampling by type of kidney function replacement therapy | ||
| Increased risk of obtaining inaccurate answers about prognosis in kidney patients relative to the general population or when comparing patients with different kidney function replacement therapy | ||
| Lack of established pathways for collaboration among ongoing disease surveillance networks, government entities, health bodies, patient and professional kidney societies, kidney registries and researchers | Disjointed efforts fostering inefficient use of available resources, inadequate data and expertise | ERA leading the efforts in developing a framework for collaboration among relevant agencies within and between countries |
| Discordance between research agenda and immediate patient needs | Additionally, facilitating research initiatives by developing a standardized research protocol and offering methodological advice | |
| Lack of a common data architecture | Limited information on important clinical aspects of the disease | Patient and professional kidney societies together highlight the importance of data linkage especially in case of a pandemic and for the high-risk population of patients with kidney disease |
| Inadequate linkage of electronic health records, kidney disease registries and other relevant data sources (e.g. pharmacy) within and between countries | Limited statistical power | Patient and professional kidney societies work with European and national counterparts to overcome administrative barriers in data linkage |
| Suboptimal quality of existing data sources including electronic health records and kidney disease registries | Incomplete understanding of the disease consequences and prognostic factors | Strengthen existing data sources including supplementing existing kidney disease registries with early-stage chronic kidney disease and routine quality control of collected data |
| Questionable generalizability and validity of drawn conclusions | Involving experts in study design and data analysis |
| Challenges in obtaining high-quality data . | Problematic consequences . | Recommendations . |
|---|---|---|
| Limited availability of diagnostic equipment | Incomplete overview of kidney patients infected with the disease | Patient and professional kidney societies develop a common front and engage with national and European authorities to ensure adequate and equitable distribution of diagnostic equipment |
| Differential sampling by type of kidney function replacement therapy | ||
| Increased risk of obtaining inaccurate answers about prognosis in kidney patients relative to the general population or when comparing patients with different kidney function replacement therapy | ||
| Lack of established pathways for collaboration among ongoing disease surveillance networks, government entities, health bodies, patient and professional kidney societies, kidney registries and researchers | Disjointed efforts fostering inefficient use of available resources, inadequate data and expertise | ERA leading the efforts in developing a framework for collaboration among relevant agencies within and between countries |
| Discordance between research agenda and immediate patient needs | Additionally, facilitating research initiatives by developing a standardized research protocol and offering methodological advice | |
| Lack of a common data architecture | Limited information on important clinical aspects of the disease | Patient and professional kidney societies together highlight the importance of data linkage especially in case of a pandemic and for the high-risk population of patients with kidney disease |
| Inadequate linkage of electronic health records, kidney disease registries and other relevant data sources (e.g. pharmacy) within and between countries | Limited statistical power | Patient and professional kidney societies work with European and national counterparts to overcome administrative barriers in data linkage |
| Suboptimal quality of existing data sources including electronic health records and kidney disease registries | Incomplete understanding of the disease consequences and prognostic factors | Strengthen existing data sources including supplementing existing kidney disease registries with early-stage chronic kidney disease and routine quality control of collected data |
| Questionable generalizability and validity of drawn conclusions | Involving experts in study design and data analysis |
List of challenges in obtaining high-quality data, its consequences, and recommendations for improvement.
| Challenges in obtaining high-quality data . | Problematic consequences . | Recommendations . |
|---|---|---|
| Limited availability of diagnostic equipment | Incomplete overview of kidney patients infected with the disease | Patient and professional kidney societies develop a common front and engage with national and European authorities to ensure adequate and equitable distribution of diagnostic equipment |
| Differential sampling by type of kidney function replacement therapy | ||
| Increased risk of obtaining inaccurate answers about prognosis in kidney patients relative to the general population or when comparing patients with different kidney function replacement therapy | ||
| Lack of established pathways for collaboration among ongoing disease surveillance networks, government entities, health bodies, patient and professional kidney societies, kidney registries and researchers | Disjointed efforts fostering inefficient use of available resources, inadequate data and expertise | ERA leading the efforts in developing a framework for collaboration among relevant agencies within and between countries |
| Discordance between research agenda and immediate patient needs | Additionally, facilitating research initiatives by developing a standardized research protocol and offering methodological advice | |
| Lack of a common data architecture | Limited information on important clinical aspects of the disease | Patient and professional kidney societies together highlight the importance of data linkage especially in case of a pandemic and for the high-risk population of patients with kidney disease |
| Inadequate linkage of electronic health records, kidney disease registries and other relevant data sources (e.g. pharmacy) within and between countries | Limited statistical power | Patient and professional kidney societies work with European and national counterparts to overcome administrative barriers in data linkage |
| Suboptimal quality of existing data sources including electronic health records and kidney disease registries | Incomplete understanding of the disease consequences and prognostic factors | Strengthen existing data sources including supplementing existing kidney disease registries with early-stage chronic kidney disease and routine quality control of collected data |
| Questionable generalizability and validity of drawn conclusions | Involving experts in study design and data analysis |
| Challenges in obtaining high-quality data . | Problematic consequences . | Recommendations . |
|---|---|---|
| Limited availability of diagnostic equipment | Incomplete overview of kidney patients infected with the disease | Patient and professional kidney societies develop a common front and engage with national and European authorities to ensure adequate and equitable distribution of diagnostic equipment |
| Differential sampling by type of kidney function replacement therapy | ||
| Increased risk of obtaining inaccurate answers about prognosis in kidney patients relative to the general population or when comparing patients with different kidney function replacement therapy | ||
| Lack of established pathways for collaboration among ongoing disease surveillance networks, government entities, health bodies, patient and professional kidney societies, kidney registries and researchers | Disjointed efforts fostering inefficient use of available resources, inadequate data and expertise | ERA leading the efforts in developing a framework for collaboration among relevant agencies within and between countries |
| Discordance between research agenda and immediate patient needs | Additionally, facilitating research initiatives by developing a standardized research protocol and offering methodological advice | |
| Lack of a common data architecture | Limited information on important clinical aspects of the disease | Patient and professional kidney societies together highlight the importance of data linkage especially in case of a pandemic and for the high-risk population of patients with kidney disease |
| Inadequate linkage of electronic health records, kidney disease registries and other relevant data sources (e.g. pharmacy) within and between countries | Limited statistical power | Patient and professional kidney societies work with European and national counterparts to overcome administrative barriers in data linkage |
| Suboptimal quality of existing data sources including electronic health records and kidney disease registries | Incomplete understanding of the disease consequences and prognostic factors | Strengthen existing data sources including supplementing existing kidney disease registries with early-stage chronic kidney disease and routine quality control of collected data |
| Questionable generalizability and validity of drawn conclusions | Involving experts in study design and data analysis |
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