Table 1

The Minimum Information Required Quideline: Kidney Disease Research and Clinical Data Reporting (version 1.0)

Participant-level information
ElementsImportanceDefinition
DemographicsDate of birthEThe calendar date on which a participant was born.
SexEThe classification of the participant's sex.
Self-reported race/ethnicityEMembership to social group based on a common heritage.
Country of birthEThe country that the participant was born in.
Country of residenceOThe country that the participant resides in.
Native language(s)EThe primary systematic means of communication used in the participant’s household.
Tribal affiliationOThe tribe which the participant is affiliated to.
Father’s country of birthOThe country in which the participant's biological father was born.
Mother’s country of birthOThe country in which the participant's biological mother was born.
Lifestyle factorsHistory of hypertension
 Has a healthcare worker ever said that you have high blood pressure or hypertension?EParticipant’s background regarding high blood pressure or hypertension.
 If yes, then at what age were you first told this?
 FOR WOMEN ONLY: Was this during pregnancy?
 Have you ever taken medication for hypertension/high blood pressure?
 If yes, then at what age did you begin taking medicine for this?
Physical activity
 7-day frequencyEThe number of occurrences of physical activity per unit time (7 days).
 TimeThe average time spent per physical activity (in min).
 IntensityThe average energy expended per physical activity. Light exercise is 20–60 min and elevates heart rate to 35%–60% of maximum heart rate (eg, housework, gardening, slow walking); moderate exercise is 20–60 min and elevates heart rate to 35%–60% of maximum heart rate (eg, basketball, single tennis, brisk walking); strenuous exercise elevates heart rate to over 60% of maximum heart rate (eg, jogging, swimming, bicycling).
Alcohol use
 Lifetime useEA description of an individual's current and past experience with alcoholic beverage consumption.
 Age of initiationThe age of initiation of alcoholic beverage consumption.
 30-day frequencyThe number of occurrences of alcoholic beverage consumption per unit time (past 30 days).
 30-day quantityA record of the quantity of alcohol consumption (in standard drinks) (past 30 days).
Tobacco use
 Lifetime useERecord of whether the participant has ever used any tobacco product during his or her entire life.
 Lifetime frequency
 Age of InitiationThe age of initiation of tobacco use.
Recreational drug use
 Lifetime useERecord of whether the participant has ever used a drug during his or her entire life.
 Age of initiationThe age of initiation of drug use.
 30-day typeA record of the participant’s type of drug use within the past 30 days.
 30-day frequencyThe number of occurrences of drug use per unit time (past 30 days).
AnthropometricsAverage heightEThe vertical measurement of distance from the sole to the crown of the head with body standing on a flat surface and fully extended (in cm). Averaged over three measurements.
Average weightEThe measurement of mass or quantity of heaviness of an individual (in kg). Averaged over three measurements.
Waist circumferenceOThe abdominal circumference at the navel (in cm).
Head circumferenceOA circumferential measurement of the head at the widest point (in cm).
Body surface areaOA measure of the 2-dimensional extent of the body surface (ie, the skin) (in m2).
Prosthesis (if applicable)ELocation of a device which is an artificial substitute for a missing body part or function.
Blood pressureAverage systolic blood pressureEThe average pressure exerted into the systemic arterial circulation during the contraction of the left ventricle of the heart. (in mm Hg).
Average diastolic blood pressureThe average pressure exerted into the systemic arterial circulation during cardiac ventricular relaxation and filling (in mm Hg).
Adverse drug reactionsMedicationOThe drug product which caused a detrimental or unintended response associated with the use of a medication.
TypeThe type of detrimental or unintended response associated with the use of a medication.
DateThe calendar date on which the ADR occurred.
Urine and Serum Test IndexUrinary albuminE24 hours measurement of urine concentration of albumin (in mg/L).
Urinary creatinineE24 hours measurement of urine concentration of creatinine (in mmol/L).
Urinary total proteinE24 hours measurement of urine concentration of total protein (in mg/L).
Serum albuminOA quantitative spot-measurement of the amount of albumin present in a sample of serum (in µmol/L).
Serum creatinineOA quantitative spot-measurement of the amount of creatinine present in a sample of serum (in µmol/L).
Serum ureaOA quantitative spot-measurement of the amount of creatinine present in a sample of serum. (in µmol/L).
Estimated glomerular filtration rateEMeasurement of the flow rate of filtered fluid through the kidney, calculated using the chronic kidney disease (CKD)-Epidemiology Collaboration (CKD-EPI) equation.
Kidney disease historyPersonal history of kidney failure
 Has a doctor or healthcare worker ever told you that you had kidney failure?EParticipant’s history of impaired kidney function, including kidney impairment, early-stage and advanced-stage kidney disease.
 How old were you when you were first told by a medical person that you had kidney failure?
 If Yes, are one or both working well now?
 Are you currently on renal dialysis?
 Have you ever had a kidney transplant?
Family history of kidney failure
 Has anyone in your family either had kidney disease or died from it?EParticipant’s background regarding impaired kidney function of blood relatives (persons related by descent).
 Do you know what type of kidney disease?
 If Yes, please specify:’
Consanguinity
 Any cases of consanguineous mating in the family?OReproduction between genetically related individuals.
 ‘If Yes, please specify:’
Sample-specific informationSample identifierEName or other identifier of an entry from a biosample database.
Sample's case or control statusOAn indication of a subject's status as a case or a control for a given study.
ConsentEThe planned process that an individual agrees to participate in.
Kidney disease-related informationHospitalEThe name and address of the institution that provides medical, surgical or psychiatric care and treatment for the sick or the injured
Clinical diagnosisEThe diagnosis made from the study of the signs and symptoms of a disease.
Date of diagnosisEThe calendar date on which a clinical diagnosis is made.
InstrumentationESpecialised objects, or items of electrical or electronic equipment, employed to perform diagnosis (with versions).
Clinical signs and symptomsEThe objective evidence of disease perceptible to the examining healthcare worker (sign) and subjective evidence of disease perceived by the patient (symptom).
Congenital conditionsOThe objective evidence of perceptible by the examining healthcare worker of defects that are present at birth.
HistopathologyOThe visual examination of cells or tissue (or images of them) with an assessment regarding the quality of the cells or tissue.
Comorbidities (systemic)EThe presence of co-existing or additional systemic diseases with reference to an initial diagnosis or with reference to the index condition that is the subject of study.
Comorbidities (pathogenic)EThe presence of co-existing or additional pathogenic diseases with reference to an initial diagnosis or with reference to the index condition that is the subject of study.
AllergiesOAn immune response or reaction to substances that are usually not harmful.
Prescribed medicationMedicationEA record of the prescribed drug product currently in use.
DosageThe size or frequency of a dose of a medicine or drug.
StrengthThe amount of the medicine or drug that provides its particular effect.
ReasonThe cause of the prescription.
Start dateThe calendar date on which treatment was initiated.
Stop dateThe calendar date on which treatment is to be or was terminated.
Non-prescribed medicationMedicationEA record of the non-prescribed drug product use in the past 2 weeks.
DosageThe size or frequency of a dose of a medicine or drug.
ReasonThe cause of the prescription.
Start dateThe calendar date on which treatment was initiated.
Stop dateThe calendar date on which treatment is to be or was terminated.
TherapyTherapyETherapeutic intervention for kidney disease, excluding, drug therapy, diet therapy, radiotherapy and surgery.
30-day frequencyThe number of occurrences of kidney therapy per unit time (30 days).
Start dateThe calendar date on which treatment was initiated.
End dateThe calendar date on which treatment is to be or was terminated.
End dateThe calendar date on which treatment is to be or was terminated.
Study-level information
Study-specific informationResearch instituteEThe name of the organisation affiliated with a specific study.
Study durationOThe duration of any specifically defined piece of work that is undertaken or attempted to meet requirements (in years).
Study start dateOThe calendar date on which the project is initiated.
Study IDEThe unique identifier of the project.
DiseaseEClinical entity defined by a set of phenotypic abnormalities resulting from a common physiopathological mechanism with a homogeneous evolution and homogeneous therapeutic possibilities.
Clinical subtypeOThe subdivision of a disease, malformation syndrome, morphological anomaly, biological anomaly, clinical syndrome or particular clinical situation in a disease or a syndrome further defined by its particular clinical presentation.
Study designEThe nature of the investigation or the investigational use for which clinical study is being done.
Study aimEA textual entity describing the study aim.
Sample sizeEThe subset number of a larger population, selected for investigation to draw conclusions or make estimates about the larger population.
PMIDOPubMed unique identifier of an article.
DOIODigital Object Identifier (DOI) of a published article.
Experiment-level information
GeneralBiospecimen typeEThe type of a material sample taken from a biological entity for research purposes.
Sample management protocolEThe specifications employed for the management of samples.
Quality control protocolEThe specifications employed to ensure a certain level of quality of biospecimens.
Experimental aimEA textual entity describing the experimental aim.
Experimental protocolEThe specifications with respect to the design and implementation of an experiment or set of experiments.
InstrumentationESpecialised equipment, tools, appliances and(or) apparatus employed in the experiment(s).
Data analysisEThe data transformation techniques used to analyse and interpret the data to gain a better understanding of it.
Experimental resultEThe outcome of the experiment or set of experiments.
Output locationOFull name and location of output (raw or analysed data).
  • E, essential; O, optional.