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The Role of Renal Registries

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Management of Kidney Diseases

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Abstract

Kidney disease registries are health surveillance systems that provide valuable information to inform the planning of nephrology services and to argue for better resource allocation. Registries can also be used to evaluate the delivery and quality of care and monitor the impact of interventions.

Most registries report on patients with kidney failure who are treated with dialysis or transplantation—there are few countries with registries for chronic kidney disease or acute kidney injury.

In this chapter, we provide a brief overview of renal registries in different parts of the world, describe the elements involved in establishing a renal registry, consider the research questions which could be effectively addressed by renal registries and describe examples of the impact of registry data on clinical practice and access to kidney care.

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Author information

Authors and Affiliations

  1. Division of Nephrology, Stellenbosch University and Tygerberg Hospital, Cape Town, South Africa

    Mogamat Razeen Davids

  2. Population Health Sciences, University of Bristol, Bristol, UK

    Fergus J. Caskey

  3. Department of Renal Medicine, Institute of Medical and Biomedical Education, St. George’s, University of London, London, UK

    John B. Eastwood

Authors
  1. Mogamat Razeen Davids
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  2. Fergus J. Caskey
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  3. John B. Eastwood
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Corresponding author

Correspondence to Mogamat Razeen Davids .

Editor information

Editors and Affiliations

  1. St George’s University Hospitals NHS Foundation Trust and St George’s, University of London, London, UK

    Debasish Banerjee

  2. The George Institute for Global Health, New Delhi, India

    Vivekanand Jha

  3. St George’s University Hospitals NHS Foundation Trust and St George’s, University of London, London, UK

    Nicholas M.P. Annear

Questions

Questions

  1. 1.

    What is the estimated global prevalence of kidney disease?

    1. A.

      200 million

    2. B.

      350 million

    3. C.

      500 million

    4. D.

      850 million

    5. E.

      1000 million

    Answer D. The “single number” paper of Jager et al. estimated that the total number of people with acute or chronic kidney disease exceeds 850 million (Kidney Int. 2019; 96:1048–1050).

  2. 2.

    Which is the world’s oldest renal registry?

    1. A.

      Australia and New Zealand Dialysis and Transplant Registry (ANZDATA)

    2. B.

      European Renal Association (ERA) Registry

    3. C.

      Malaysian Renal Registry

    4. D.

      US Renal Data System (USRDS)

    5. E.

      The South African Renal Registry

    Answer B. The ERA Registry was the first, established in 1964.

  3. 3.

    Which are the most important benefits of a renal registry?

    1. A.

      Informs the planning, delivery and evaluation of nephrology services

    2. B.

      Helps to direct the care of individual patients

    3. C.

      Collects comprehensive information for research projects

    4. D.

      Tracks expenditure related to kidney replacement therapy

    5. E.

      Compares the performance of nephrologists and treatment centres

    Answer A: Providing critical information for the planning, delivery and evaluation of nephrology services is the main purpose. A registry will not typically help to direct an individual patient’s care, although including an individual patient’s data may help inform the care of future patients with a similar condition. Some well-established registries do report centre-based data, but this is not common and could lead to reduced participation by nephrologists and treatment centres when establishing a new registry.

  4. 4.

    What is the likely reason for the low prevalence of patients on kidney replacement therapy in South Africa (186 pmp in 2018)?

    1. A.

      The burden of kidney disease is low

    2. B.

      Data capture is incomplete and there is substantial under-reporting

    3. C.

      The South African registry does not include patients with a kidney transplant

    4. D.

      The South African registry does not include patients treated in private treatment centres

    5. E.

      Access to kidney replacement therapy is low because of limited resources

    Answer E: Access to KRT in the poorly resourced public healthcare sector is the main reason; this sector provides care for 85% of the population and, unfortunately, there has been no real increase in access to KRT over the past two decades. The South African Renal Registry has country-wide coverage, in both public and private healthcare sectors, and includes all modalities of KRT.

  5. 5.

    Which are the important initial steps when setting up a renal registry?

    1. A.

      Identifying stakeholders, assembling the team and clarifying the purpose, scope and outputs

    2. B.

      Finding cases, collecting data and ensuring data quality

    3. C.

      Developing a database and an online data capture system

    4. D.

      Drafting policies for data access and publications

    5. E.

      Securing funding for the registry

      Answer: A. All the above are important, but identifying stakeholders, assembling the team and clarifying the purpose, scope and outputs are the priorities at the start.

  6. 6.

    Should registries strive to access multiple data sources?

    1. A.

      Only data submitted by the patient’s doctor should be used

    2. B.

      Only data submitted by the patient’s treatment centre should be used

    3. C.

      Only data submitted by the patient’s doctor or treatment centre should be used

    4. D.

      Yes, using multiple sources would improve data completeness and quality

    5. E.

      Patients should be consulted and data collection adapted accordingly

    Answer D. The strength of a registry lies in capturing accurate data on all (or almost all) patients. Accessing multiple data sources would improve data completeness and quality.

  7. 7.

    What should be included in the dataset collected by new registries?

    1. A.

      A minimum dataset: demographics, primary disease, treatment start/end and modality

    2. B.

      Basic data plus data on treatment aspects such as dialysis adequacy, vascular access, etc.

    3. C.

      Basic data plus data on treatment aspects, laboratory tests and hospitalisations

    4. D.

      Data as above, plus data patient reported outcomes, such as quality of life

    5. E.

      Comprehensive data to facilitate research projects

    Answer A. New registries are advised to keep the dataset to the minimum to reduce the administrative burden and increase compliance with data submission, especially where this is not mandatory. Once regular data submission has been established, additional information can be requested.

  8. 8.

    Please indicate whether each of the following statements about renal registries are true or false.

    1. A.

      Renal registries can aid efforts to prevent, detect and treat the earlier stages of CKD by identifying the most important causes of kidney failure in each country

    2. B.

      Renal registry data allows the nephrologist to predict the exact cause of death in a patient who has been on kidney replacement therapy for four years

    3. C.

      Registry data can highlight disparities in the provision of KRT services within and between countries

    4. D.

      A patient can request to have his/her identifiable data deleted from the registry

    5. E.

      Renal registries can identify sub-groups with reduced access to treatment or poor outcomes and monitor the adoption and impact of evidence-based interventions

    6. A.

      True

    7. B.

      False - Registry data reports on groups of patients and can generate the probabilities of outcomes of interest, but these cannot be expected to always apply in individual patients

    8. C.

      True

    9. D.

      True – If possible, suggest that your patient considers the option of having only the identifiable information deleted, or replaced by a code, so that all the information is not lost. Explain the importance of including everyone’s information and the measures being taken to keep it safe.

    10. E.

      True

  9. 9.

    Please indicate (True/False) whether each of the following are real-life examples of questions answered by a renal registry.

    1. A.

      Establishing the Tunisian dialysis registry led to an increase in the number of nephrologists, development of a new transplantation programme, new dialysis units, and a kidney disease prevention programme

    2. B.

      The Thailand Renal Replacement Therapy Registry was instrumental in building the case for the “PD First” programme, which saw a marked increase in access to peritoneal dialysis as the initial modality of treatment.

    3. C.

      Data from the Malaysian Renal Registry was used to successfully argue for increased funding of KRT as their country’s national wealth increased

    4. D.

      The 3C study randomised kidney transplant recipients to tacrolimus or sirolimus maintenance therapy, with follow-up data on graft function, patient survival, and mortality obtained by linking to routine databases including the UK Renal Registry

    5. E.

      In South Africa, the first report of the re-established South African Renal Registry revealed a markedly uneven distribution of KRT across provinces and large differences in prevalence rates between the resource-constrained public healthcare sector and the well-resourced private sector (73 vs. 620 pmp).

    Answers: A–E are all True.

  10. 10.

    Which aspects of a registry facilitate comparisons of aggregate data?

    1. A.

      Careful capturing of data from the notes of the treating doctor

    2. B.

      Avoiding methods other than online data capture

    3. C.

      Obtaining ethical approval for data sharing

    4. D.

      Ensuring that duplicate entries are avoided

    5. E.

      A data dictionary which uses well-established definitions and coding systems

    Answers: E. The data dictionary describes the elements to be collected and specifies the data type (categorical, ordinal, numerical), precision (number of decimal points), range of acceptable values, etc. Definitions should conform to those used by well-established registries to facilitate comparisons and to allow the aggregation of data. For example, the coding of the primary kidney disease should use an established system such as the ERA Registry coding scheme.

  11. 11.

    The majority of existing renal registries report on which group of patients predominantly?

    1. A.

      Patients with a genetic kidney disease

    2. B.

      Patients with ESKD treated with dialysis or transplantation

    3. C.

      All patients with CKD of any cause

    4. D.

      Patients with AKI

    5. E.

      Only those patients with an unknown aetiology of their kidney disease

    Answer: B. Patients with ESKD treated with dialysis or transplantation

    1. A.

      Patients with a genetic kidney disease—incorrect—all causes of kidney disease are considered, not solely those with a genetic kidney disease

    2. B.

      Patients with ESKD treated with dialysis or transplantation—correct—Most registries report on patients with kidney failure who are treated with dialysis or transplantation—there are few countries with registries for CKD or AKI

    3. C.

      All patients with CKD of any cause—incorrect—Most registries report on patients with kidney failure who are treated with dialysis or transplantation—there are few countries with registries for CKD or AKI

    4. D.

      Patients with AKI—incorrect—Most registries report on patients with kidney failure who are treated with dialysis or transplantation—there are few countries with registries for CKD or AKI

    5. E.

      Only those patients with an unknown aetiology of their kidney disease—incorrect, the registry will include patients with both known and unknown aetiologies of their kidney disease.

  12. 12.

    It is recognised that the reported prevalence of kidney replacement therapy varies widely between countries. Which of these factors is likely to contribute most significantly to this variation?

    1. A.

      Differing access to dialysis and transplantation

    2. B.

      Variations in the data collection

    3. C.

      Different patterns of disease prevalence

    4. D.

      Many registries do not collect data on transplants

    5. E.

      The exclusion of adults on peritoneal dialysis from most registries

    Answer: A. Differing access to dialysis and transplantation

    1. A.

      Differing access to dialysis and transplantation—correct—in LMICs in particular, access to dialysis and transplantation may be limited, thus giving an artificially low reported prevalence.

    2. B.

      Variations in the data collection process—incorrect—The extremely wide variation in reported prevalence is mainly a reflection of differing access to dialysis and transplantation

    3. C.

      Different patterns of disease prevalence—incorrect—while the burden of kidney disease will indeed vary globally, the access to dialysis and transplantation amongst patients with ESKD makes a more significant contribution.

    4. D.

      The majority of registries do not collect data on transplants—incorrect—According to SharE-RR, 74% of registries do collect transplant data.

    5. E.

      The exclusion of adults on peritoneal dialysis from most registries—incorrect—According to SharE-RR, 92% of registries collect data on peritoneal dialysis.

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Davids, M.R., Caskey, F.J., Eastwood, J.B. (2023). The Role of Renal Registries. In: Banerjee, D., Jha, V., Annear, N.M. (eds) Management of Kidney Diseases. Springer, Cham. https://doi.org/10.1007/978-3-031-09131-5_28

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