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Table 3 Proposed MDS for HUS registries

From: Lessons learned from hemolytic uremic syndrome registries: recommendations for implementation

Data group

Data elements

Demographic and current episode data

Patient identity: first name, last name, date and place of birth, place of residence, age, sex

Other patient data: weight, height, body mass index, race

Encounter summary such as final diagnosis, residual symptoms (e.g., neurologic, cardiac, renal, bleeding)

Data related to the patient care center and the referring physicians and centers

Medical and family history

History of the HUS, risk factors and causes of the disease such as infections, systemic diseases, drugs used concomitantly with the disease, history of kidney transplantation, family history, time from diagnosis to patient registration, age of onset, co-morbidities (e.g. hypertension, malignancy, etc.),

Signs and symptoms (clinical/laboratory)

Clinical: diarrhea (bloody or non-bloody), vomiting, nausea, abdominal pain, fever, number of days of onset of symptoms at the time of admission, time course of the acute illness, headache or dizziness, high blood pressure, paleness, lethargy

Laboratory (at admission and discharge): Hematology, biochemistry, immunology (such as ANA) tests, urine analysis (creatinine, urea, and blood levels in urine), urine culture, stool culture (to detect E. coli), genetic tests such as Complement factors (B, H, I), C3, C4, ADAMTS13, and direct antiglobulin test (direct Coombs)

Para-clinical measures

Types of imaging of different parts of the body (ultrasound, MRI, etc.) and results

Therapeutic and pharmaceutical data

Drugs: Ecu (number, the date of the first dose, and continuation of PEX after the start of Ecu), Rituximab, Antibiotics, Steroids, Anticoagulants, Coagulants, Immunoglobulins, Corticosteroids

Therapeutic measures: Plasma injections, PEX (date of first PEX, number of PEX), serum creatinine

Complications

Complications of drugs, therapeutic or diagnostic measures (during hospitalization)

Efficacy and safety data for treatments, for example, meningococcal infections, sepsis, other serious infections, and death after Ecu or other medications

Short and long-term outcomes

Severe hypertension, renal and neurological dysfunction (with severity), recurrence of the disease, Slurred speech, Personality changes, Visual impairment, Seizures, Coma, Length of hospital stay, Problems with concentration, memory, and fatigue, Depression, Systemic lupus erythematosus, Hypertension, Diabetes mellitus, Hemorrhage, Sepsis, Cognitive dysfunctions, Death (date and cause), Splenectomy, Hemodialysis, Peritoneal dialysis, Kidney or liver transplantation

Data about biological samples

Plasma, urine, DNA, and umbilical cord (with sample details, date of sample collection, type of treatment, and laboratory values of patients on the date of sample collection)

  1. ADAMTS13: a disintegrin and metalloproteinase with a thrombospondin type 1 motif, member 13; ANA: Antinuclear antibody; DNA: Deoxyribonucleic Acid; E. coli: Escherichia coli; Ecu: Eculizumab; HUS: Hemolytic Uremic Syndrome; MRI: Magnetic Resonance Imaging; PEX: Plasma Exchange