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Table 1 Themes and sub-themes regarding to the IRI.HUS.Reg model

From: Development and pilot implementation of Iranian Hemolytic Uremic Syndrome Registry

Theme

Sub-themes

No. of interviewees

1. Purposes of implementing the IRI.HUS registry

Assisting in HUS-related clinical research

7

Accessing to patients' information in their various referrals

6

Identifying the underlying causes of HUS (to achieve related treatment)

6

Improving the diagnosis/treatment of HUS

6

Increasing medical knowledge for HUS management

4

Discovering the infectious sources that cause HUS

3

Supporting health policy for drug import

3

Determining the prevalence of HUS in Iran

3

Enabling international participation in the field of HUS

2

Organizing a campaign for patients to receive any supports

1

2. Inclusion criteria

Uremia and reduced renal function

9

Microangiopathic hemolytic anemia

9

Reduced platelet count

8

Increased lactic dehydrogenase

5

Negative Coombs test

3

Diagnosis of HUS by a nephrologist

2

Only patients under-five years

2

3. Data collection

Data collection by the patient's physician

5

Using trained/expert people to collect data

5

Case finding through HUS diagnostic ICD code in medical records

4

Centralized data collection by a reference center

2

4. Data quality control

An expert or trained person for data quality control

5

Entering the data of each patient by his/her physician

4

Continuous evaluation of data quality

4

Random verification of data by an expert

3

Quality control feedback to data collectors

2

Evaluation of data quality by the Iranian Society of Pediatric Nephrology

1

5. Data sources

Hospitals (especially pediatric referral centers)

10

Outpatient centers (especially related to follow-up or pre-hospital information)

7

Specialized laboratories (nephrology or genetics)

2

Urban or rural health centers

2

6. Analysis of registry data

Determining the ratio (percentage) of patients in terms of each variable

7

Determining the average values of each variable

7

Comparative charts of patient data

4

7. Registry software specifications

Optimal outputs

3

Possibility of modifying and editing data

2

Software alerts

2

Patient follow-up reminder

2

No need for additional typing

2

Automated calculations

2

Enabling to upload patient reports to software

2

  1. HUS Hemolytic Uremic Syndrome; ICD International Classification of Diseases; IRI.HUS.Reg Iranian Hemolytic Uremic Syndrome Registry