Table 2 The data classes and elements proposed by the participants for the IRI.HUS.Reg

Demographic

Name, last name, father's name, Identification (ID) code, age, gender, address, phone

Physical examinations

Edema or dehydration of the patient's body and heart/lung sound auscultation

Blood pressure, vital signs, height, weight, Body Mass Index (BMI)

Signs and symptoms

Diarrhea, vomiting, fever, nausea, paleness, fatigue, weakness, lethargy, high blood pressure, discoloration of the urine (blood in the urine) and decreased urine volume (with duration), swelling in the organs

Underlying disease and risk factors (causes)

Medications taking, radiotherapy or chemotherapy, diet Exposure to contaminated sources (such as contaminated water and food) Patient living area (villages, suburbs, contaminated areas with unfavorable sewage status, etc.)

Dealing with pesticides or livestock

Scorpion bites (like Gadim scorpion)

Underlying diseases such as cancer, hypertension, collagen vascular diseases, deficiency of some immune factors or complement components, genetic diseases, cardiovascular diseases

Past and family history

Age at onset of symptoms

History of gastrointestinal and respiratory infections (especially Shiga toxin infection) in the previous two weeks (bloody diarrhea or cold and acute pediatric pneumonia)

Past history of HUS in the patient or patient's family (sibling with previous HUS)

Laboratory data

Hemoglobin, platelet count, Peripheral Blood Smear (PBS) (to check for Shistocyte), creatinine and urea reticulocytes, lactic dehydrogenase, calcium, sodium, potassium phosphorus, urine output, presence of red and white blood cells in the urine, cast in urine, stool culture, coombs, complement-related factors such as C3, C4, CFH

CFI and CHB, Cluster of Differentiation 46 (CD46), A Disintegrin and Metalloproteinase with a Tthrombospondin type 1 motif, member 13 (ADAMTS13), Antinuclear Antibody (ANA), liver tests such as Serum Glutamic-Pyruvic Transaminase (SGPT) and Alanine Aminotransferase (ALT), albumin and Protein Total (PT)

Paraclinical measures

Ultrasound of the abdomen and other organs of the body, echocardiography, and MRI

Treatment, medications

Supportive therapies, medications such as antibiotics, antihypertensives such as Enalapril, Anticoagulant, Eculizumab (dosage, prescription method, and duration of use), Immunosuppressant drugs, Methylprednisolone pulse therapy, Monoclonal antibodies, Plasmapheresis, Plasma exchange (plasma rate and duration of treatment), Hemodialysis (HD) or Peritoneal Dialysis (PD) (with results) and kidney transplantation (with results)

Complications and outcomes

Recurrence of HUS (especially atypical type), severe renal failure, severe anemia, neurological complications such as seizures, diabetes, hypertension, and increased blood protein levels

Patient’s status at discharge

Recovery, along with renal failure, recommend to follow up, and Against Medical Advice (AMA)

Patient follow-ups

Evaluation of clinical signs, laboratory findings, medications, ultrasounds, and other paraclinical procedures every few months (once every three to six months)