RaDaR Data Entry Instructions

The following instructions indicate which tabs should be filled in for each cohort of patients on RaDaR.

Downloadable data entry instructions for all conditions

If you have Patient View at your site you must get the patient added to PV and enable PV extraction on their renal system record to ensure that the data flows into RaDaR.

Please contact us if you have queries about RaDaR data entry.

 

  • ADPKD

    Please fill in the following tabs for ADPKD patients:

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Co-morbidities
    • Genetics
    • Family History
    • Renal Imaging
    • Liver Imaging
    • Liver Disease

     

    If applicable

    • Kidney Transplants
    • Liver Transplants
    • Dialysis
    • Nephrectomies
    • Nutrition

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Alports

    Please fill in the following tabs for Alport Syndrome patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Clinical Picture

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • ADTKD (FUAN)

    Please fill in the following tabs for (ADTKD/FUAN) patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Co-morbidities
    • Genetics
    • Family History
    • Clinical Picture

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • aHUS

    Please fill in the following tabs for aHUS patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Co-morbidities
    • Family History

     

    If applicable

    • Dialysis
    • Plasmapheresis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • APRT-D

    Please fill in the following tabs for APRT-D patients: Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Co-morbidities
    • Renal Imaging
    • Pathology

     

    If applicable

    • Dialysis
    • Plasmapheresis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • ARPKD/NPHP

    Please fill in the following tabs for ARPKD/NPHP patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis – please select either ARPKD or NPHP

     

    Strongly Recommended

    • Co-morbidities
    • Genetics
    • Family History
    • Fetal Anomaly Scans
    • Renal Imaging
    • Liver Imaging
    • Liver Diseases
    • Nutrition

     

    If applicable

    • Kidney Transplants
    • Liver Transplants
    • Nephrectomies
    • Dialysis

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • BK Nephropathy

    Detailed PDF instructions available to download from https://tinyurl.com/BK-Neph-data or from request via Melanie.Dillon@renalregistry.nhs.uk

  • Calciphylaxis

    Please fill in the following tabs for Calciphylaxis patients:

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Clinical Picture
    • Co-morbidities
    • Family History
    • Renal Imaging

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Cystinosis

    Please fill in the following tabs for Cystinosis patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Renal Imaging

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Cystinuria

    Please fill in the following tabs for Cystinuria patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Renal Imaging

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Dent Disease & Lowe Syndrome

    Please fill in the following tabs for Dent & Lowe patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Clinical Picture
    • Genetics
    • Family History
    • Renal Imaging

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Fabry Disease

    Fabry Diagnosis Algorithm

    Please fill in the following tabs for Fabry Disease patients:

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Renal Imaging

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Fibromuscular Dysplasia

    Please fill in the following tabs for Fibromuscular Dysplasia patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Renal Imaging

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • HNF1-B

    Please fill in the following tabs for HNF1-b patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Fetal Anomaly Scans
    • Renal Imaging
    • Clinical Pictures
    • Pathology

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Stec HUS

    Please fill in the following tabs for Stec-HUS patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Co-morbidities
    • Pathology

     

    If applicable

    • Dialysis
    • Plasmapheresis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Hyperoxaluria

    Please fill in the following tabs for Hyperoxaluria patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Renal Imaging
    • Clinical Pictures

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • IgA Nephropathy

    Please fill in the following tabs for IgA Nephropathy patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Clinical Picture
    • Genetics
    • Family History

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Inherited Renal Cancer Syndromes

    The inclusion criteria are as follows:

    1.A molecular or clinical diagnosis according to standard criteria of any of the following conditions

    • Von Hippel Lindau disease (VHL) OMIM 193300
    • PTEN hamartoma tumour syndrome (Cowden syndrome) OMIM 158350
    • Birt Hogg Dube syndrome (BHD) OMIM 135150
    • Hereditary leiomyomatosis and renal cell cancer syndrome(HLRCC) OMIM 150800
    • Succinate dehydrogenase-related tumour predisposition syndrome
    • BAP1-related tumour predisposition syndrome OMIM 614327
    • Hereditary Type 1 papillary renal cell carcinoma syndrome (MET oncogene) OMIM 605074

     

    2. Two or more cases in first degree relatives of any type of renal cancer without an established  molecular or clinical diagnosis

    3. Bilateral, multiple primary renal cancers of any histopathological type with or with a family history

     

    Please fill in the following tabs for Inherited Renal Cancer Syndrome patients:

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

    Strongly Recommended

    • Co-morbidities
    • Genetics
    • Family History
    • Pathology
    • Renal Imaging

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • INS & NephroS

    Detailed PDF instructions available to download from https://tinyurl.com/NephrosDatav4 or from request via Melanie.Dillon@renalregistry.nhs.uk

  • MGRS

    A Crib Sheet of the conditions that are included in the MGRS cohort is available to download from https://tinyurl.com/mgrs-crib-sheet or from request via Melanie.Dillon@renalregistry.nhs.uk  

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis – specific diagnosis to be selected

     

      Strongly Recommended

    • Pathology
    • Family History
    • Comorbidities

     

      If applicable

    • Hospitalisations
    • Plasmapheresis
    • Dialysis
    • Kidney Transplants

     

      Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results – fill in gaps manually
  • MPGN

    Detailed PDF instructions available to download from https://tinyurl.com/MpgnData or from request via Melanie.Dillon@renalregistry.nhs.uk

  • Membranous Nephropathy

    Please fill in the following tabs for Membranous Nephropathy patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Mitochondrial Renal Disease

    Please fill in the following tabs for Mitochondrial Renal Disease patients:

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

    Strongly Recommended

    • Co-morbidities
    • Genetics
    • Family History
    • Pathology

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Pregnancy

    Please fill in the following tabs for Pregnancy and CKD patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis – please only put ‘Pregnancy’ if there is no other appropriate option, and put the EDTA Renal Diagnosis in the Comorbidity tab so we know what the additional renal disease is

     

    Strongly Recommended

    • Pregnancies
    • Fetal Ultrasounds

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Pure Red Call Aplasia

    Please fill in the following tabs for Pure Red Cell Aplasia patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Retroperitoneal Fibrosis

    Please fill in the following tabs for Retroperitoneal Fibrosis patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Family History

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Tuberous Sclerosis

    Please fill in the following tabs for Tuberous Sclerosis patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Co-morbidities
    • Genetics
    • Family History
    • Renal Imaging

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Tubulopathy (formally Hypokalaemic Alkaloses)

    Please fill in the following tabs for Tubulopathy patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Genetics
    • Family History
    • Clinical Features
    • Co-morbidities
    • Renal Imaging

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
  • Vasculitis

    Please fill in the following tabs for Vasculitis patients:

     

    Compulsory

    • Demographics
    • Consent
    • Consultants
    • Primary Diagnosis

     

    Strongly Recommended

    • Comorbidities
    • Family History
    • Renal Imaging
    • Pathology

     

    If applicable

    • Dialysis
    • Kidney Transplants

     

    Transferred from Patient View if the patient is registered with both systems

    • Medications
    • Lab Results
Data Entry Instructions Version 12 Updated October 2019
Written by the Rarerenal.org Operational Management Board