Table 4 Classification of data classes and elements of the IRI.HUS.Reg in the first round of the Delphi technique

Demographic

Name*, Family name*, Father's name*, ID Code*, Date of birth*, Age*, Gender*, Ethnic, Address, Place of birth, Phone

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Referral and hospitalization

Hospital name*, Patient referral center (hospital, office, clinic)

Patient referring physician

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Physical examinations

Observation of edema* or dehydration*, Heart/lung sound auscultation, Blood pressure*, Vital signs, Height*, Weight*, Body Mass Index (BMI)

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Signs and symptoms

Diarrhea* (bloody, non-bloody), Vomiting*, Nausea*, Abdominal pain*, Fever*, Paleness, Fatigue, Weakness and lethargy, Headache, Vertigo, Increased blood pressure*, Urine discoloration* (blood in the urine), Decreased urine volume*, Swelling in the limbs

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Underlying disease and risk factors (causes)

Exposing to contaminated sources (such as contaminated water and food), Patient living area (villages, suburbs, etc.), Medications taking, Lack of complement components*, Underlying genetic diseases*, Cancer or malignancy, Underlying collagen vascular diseases, Underlying heart disease, Underlying kidney disease*, Underlying high blood pressure, Underlying infections, Underlying systemic diseases

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Exposing to radiotherapy or chemotherapy, Diet, Contact with livestock, Contact with agricultural pesticides, Scorpion bites (like Gadim scorpions)

Laboratory tests

Hematology, Urine analysis*, Urine culture, Stool culture, Biochemistry, Immunology, Hemoglobin*, Platelet count*, Peripheral blood smear*, Creatinine* and urea*, Reticulocytes, Lactic dehydrogenase*, Calcium, Sodium, Potassium, Phosphorus, Urine output*, Presence of RBC and WBC in urine, Cast in urine, Coomb, Factors related to the complement system such as C4, C3, CFB, CFI, CFH, ADAMTS13, Antinuclear Antibody (ANA, Albumin protein, Total protein, Genetic test result, and upload report

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Disease history

Past history*, Family history (sibling)*, Age at onset of symptoms*, Number of days of onset of symptoms at admission, Duration of diagnosis until patient registration, History of gastrointestinal infection (especially Shiga-toxin) in the previous two weeks (dysentery), History of respiratory infection two weeks ago (cold or acute pneumonia), History of systemic diseases, History of kidney transplantation

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Parental consanguineous marriage

Paraclinical measures

Abdominal ultrasound and its outcome, Echocardiography and its outcome, MRI and its result, Chest photo and its result, Brain CT (Computerized Tomography) scan and its result

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Treatments and medications

Supportive therapies, Antibiotics, Lowering blood pressure like Enalapril, Anticoagulants, Coagulation drugs, Eculizumab, Rituximab, Immunoglobulins, Steroids, Immunosuppressive drugs, Pulse methylprednisolone, Monoclonal antibodies, Dosage of drugs, Duration of medication, Date of consumption of the first dose, Plasma injection*, Plasma exchange*, Hemodialysis or peritoneal dialysis* (with results), Kidney transplant (with results), Splenectomy (with results), Liver transplantation* (with results)

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Date of the first treatment

Complications and outcomes

Recurrence of the disease*, Severe kidney failure*, Severe anemia, Neurological complications such as seizures, Diabetes, Hypertension, Increased blood protein levels in the long term, Side effects of medications and treatments (during hospitalization), The severity of complications and outcomes, Depression, Bleeding, Sepsis, Other serious infections, Death* (date and main cause of death)

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Systemic lupus erythematosus, Meningococcal infections

Patient’s status at discharge

Recovery, Discharge along with renal failure, Recommend to follow*

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Against Medical, Advice (AMA)

Patient follow-up

Clinical signs, Laboratory findings,

Medications used, Paraclinical procedures performed

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