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Renal DataSchema Version 1
GENECURE WP1/5 product
Contact: Marion Verduijn, m.verduijn@lumc.nl
Module Theme Domain
Relevance
Variable
Definition
Categories
CLINICAL ASSESSMENT
Individual Disease History
Individual history of cancer
Cancer in medical history of the participant Individual history of diabetes
Diabetes in medical history of the participant Age of the participant at diabetes diagnosis Individual history of retinopathy
Retinopathy in medical history of the participant Individual history of high blood pressure
High blood pressure in medical history of the participant Individual history of ischemic heart disease
Ischemic heart disease in medical history, defined as Individual history of congestive heart failure
Heart failure in medical history of the participant Individual history of cerebrovascular disease
Cerebrovascular disease in medical history, defined as Individual history of peripheral vascular disease
Peripheral vascular disease in medical history Peripheral vascular disease in medical history of the participant Individual history of chronic obstructive pulmonary disease
Chronic obstructive pulmonary disease in medical his obstructive pulmonary disease in medical history of the participant Individual history of HIV
HIV in medical history of the participant Individual history of chronic hepatitis
Hepatitis B in medical history of the participant Hepatitis C in medical history of the participant Individual history of renal disease
Date of kidney biopsy performed for renal disease diag Individual Intervention History
Individual history of dialysis
Total time that the participant has been treated with hem Total time that the participant has been treated with peri Serious dialysis-related complications in medical histo dialysis-related complications during dialysis treatment that nec Number of peritonitis episodes during dialysis treatment of the participant Encapsulating peritoneal sclerosis in dialysis ulating peritoneal sclerosis during dialysis treatment of the particip Access-related sepsis in dialysis history Access-related sepsis during dialysis treatment of the participant Individual history of kidney transplantation
Date of most recent transplantation Date of most recent transplantation Total number of transplantations during the participant's life History of previous kidney transplantation(s) Number of previous transplantations Total number of transplantations during the participant's life before current/most recent one Familial Disease History
Family history of renal disease
Renal disease in medical history of family members Presence of renal disease amongst members of the biological family of t Family history of ischemic heart disease
Ischemic heart disease in medical history of family mem e of ischemic heart disease amongst members of the biological fa Family history of high blood pressure
High blood pressure in medical history of family memb e of high blood pressure amongst members of the biological fam Life habits/Behaviours
Tobacco Use
Indicator of whether a participant has ever smoked tobacco Indicator of whether a participant currently smokes tobacco Sociodemographic Characteristics
Individual birth location
Classification based on the List of countries (ISO-3166) Parental birth location
Country where the participant's biological mother was born Classification based on the List of countries (ISO-3166) Country where the participant's biological father was born Classification based on the List of countries (ISO-3166) Biological mother's mother's country of birthCountry where the biological mother of the participant's mother was born Classification based on the List of countries (ISO-3166) Biological mother's father's country of birthCountry where the biological father of the participant's mother was bo fication based on the List of countries (ISO-3166) Biological father's mother's country of birthCountry where the biological mother of the participant's father was bo fication based on the List of countries (ISO-3166) Biological father's father's country of birth Country where the biological father of the participant's father was born Classification based on the List of countries (ISO-3166) Medication
Medication currently taken by the participant Antihypertensive treatment
Current prescription of antihypertensive treatment Current prescription of angiotensine receptor blocker Current prescription of calcium channel blocker Calcium/phosphorus treatment
Current prescription of calcium phosphorus treatment Calcium containing phosphate bindersCurrent prescription of calcium containing phosphate binders Yes, NoNon-calcium containing phosphate binders Current prescription of non-calcium containing phosphate binders Current prescription of vitamin D analogs Lipid lowering treatment
Current prescription of lipid lowering treatment Diuretics
Current prescription of aldosteron antagonists Anticoagulation/antiplatelet treatment
Current prescription of anticoagulation treatment Immunosuppressive treatment
TX: Incident: at leave of hospital; Prevalent: at recruitment
Current prescription of immunosuppresive treatment Current prescription of calcineurin inhibitors Type of currently prescribed calcineurin inhibitors Type of currently prescribed antimetabolites Mammalian targets of rapamycin (mTOR) inhibitors scription of mammalian targets of rapamycin (mTOR) inhibitors Antianemic treatment
Current prescription of erythropoietin stimulatin agent therapy Yes, No Administration route of currently prescribed ESA therapy Administration route of currently prescribed iron therapy Individual Medical Intervention
Conservative renal treatment
Hemodialysis treatment
Participant currently undergoes hemodialysis Hemodialysis type currently used by the participant Hemodialysis, Hemofiltration, Hemodiafiltration Participant's principle vascular access used for hemodialysis AV fistula, AV graft, Catheter Renal urea clearance measused from 24hr urine col Renal creatinine clearance measused from 24hr urine col Dialysis urea clearance measured as dialysis eKt/V_urea Dialysis urea clearance measured as urea reduc Peritoneal dialysis treatment
Participant currently undergoes peritoneal dialysis Peritoneal dialysis type currently used by the participant Automated peritoneal dialysis, Continuous ambulatory peritoneal dialysis Mean duration of automated peritoneal dialysis sess Fluid of last bag in the abdominal cavity during daytime Mean daily glucose concentration of fluid Renal Kt/V urea measured from 24hr urine collecti Renal creatinine clearance measused from 24hr urine collecti Peritoneal Kt/V urea measured from 24hr dialysate co Peritoneal creatinine clearance measured from 24hr dialysate c Information critical to interpret the measures of dialysis adequacy: method /software used? Renal transplantation
Incident: current; prevalent: most recent
Date of hospital discharge of transplantation DD/MM/YYYY Preformed antibodies, most recent value before tran Number of A mismatches of the participant vs donor Number of B mismatches of the participant vs donor Number of DR mismatches of the participant vs donor HLA cross match positive at transplantation Need for dialysis in the first week after transplantation Physical measures
Anthropometric measures
The vertical measurement or distance from the foot to the head of the participant when he/she is standing Information critical to interpret height measurement Weight of the participant; HD: postdialysis; PD: empty abd Information critical to interpret weight measurement Body circumference
Body composition measures
Body mass index
Weight (in kilogrammes) divided by height squared (in me Information critical to interpret body mass index: not valid in case of major amputation Body function measures
Blood pressure
Diastolic blood pressure measured at rest Information critical to interpret blood pressure measurement at rest Heart rate
Number of heart beats per minute measured at rest Information critical to interpret heart rate measurement at rest Kidney function
Residual renal function defined as urine flow >= 500ml per dayYes, No Biochemical measures
Measures in Blood
Preferred: at recruitment, otherwise: during month before recruitment (mean in case of multiple measures); incident TX: at hospital leave or one month after TX Calcium/ phosphate
Inflammation/ malnutrition
Anemia/blood characteritics
Kidney function
Serology
Cytomegalovirus status, in prevalent patients at time of most recent tran Information critical to interpret the measures in blood
Indication whether the participant was in a fasting status at blood withdrawl Interdialytic interval after which the blood withdrawl was taken Short, Long Measures in Urine
Protein/creatinine ratio, second best, if no 24h urine Measures in Dialysate
PET measures
Medical Health Information during Follow Up
Mortality
Mortality
Death during follow up of the participant Individual Disease Occurrence
Cancer during follow up of the participant Diabetes mellitus
Diabetes during follow up of the participant Date of diagnosis of diabetes mellitusDate of diagnosis of diabetes mellitus Ischemic heart disease
Newly diagnosed ischemic heart disease Ischemic heart disease during follow up of the participant Date of diagnosis of ischemic heart disease Date of hospitalization for ischemic heart disease Congestive heart failure
Newly diagnosed congestive heart failure Congestive heart failure during follow up of the participant Date of diagnosis of congestive heart failure Date of hospitalization for congestive heart failure Cerebrovascular disease
Newly diagnosed cerebrovascular diseaseCerebrovascular disease during follow up of the participant Date of diagnosis of cerebrovascular disease Date of hospitalization for cerebrovascular disease Peripheral vascular disease
Newly diagnosed peripheral vascular disease Peripheral vascular disease during follow up of the participantYes, No Date of diagnosis of peripheral vascular diseas ospitalization for revascularization/surgery Infection
Infection that requires hospitalization during follow up of the participan Access-related sepsis
Access-related sepsis during follow up of the participant Date of hospitalization for access-related sepsis Ultrafiltration failure
Ultrafiltration failure during follow up of the participants defined as ultrafiltra tion < 400ml per 4hr with 3,86 glucose concentration Date of ultrafiltration failure diagnosis Date of diagnosis of ultrafiltration failure Peritonitis
Peritonitis during follow up of the participant Encapsulating peritoneal sclerosis
Newly diagnosed encapsulating peritoneal sclerosis Encapsulating peritoneal sclerosis during follow up of the participant Date of diagnosis of encapsulating peritoneal scl iagnosis of encapsulating peritoneal sclerosis Technique failure
Technique failure during follow up of the participant defined as switch t Transplant rejection
Transplant rejection during follow up of the participant, biopsy proven Non-fatal graft failure
Graft failure during follow up of the participant, defined as still alive and Yes, No permanent return to dialysis or need for retransplantation Chronic rejection, Acute rejection, Medication toxicity, Polyoma virus, Technical, Other Chronic rejection, Acute rejection, Medication toxicity, Polyoma virus, Technical, Other Polyoma virus nephropathy
Newly diagnosed polyoma virus nephropathy, biopsy proven Polyoma virus nephropathy during follow up of the participant, biopsy proven Individual Medical Intervention
Amputation
Amputation during follow up of the participant Parathyroidectomy
Parathyroidectomy during follow up of the participant Dialysis
Start on dialysis during follow up of the participant Kidney transplantation
Kidney transplantation during follow up of the participant Administrative data
Administrative data
Administrative data

Source: http://www.regenet.eu/files/site/bestanden/renal_datashaper/renal_dataschema_version_1-nov_18_2009.pdf