Table 3 Results of the first round of the Delphi regarding features of the IRI.HUS.Reg

Purposes of implementing the IRI.HUS registry

Promoting HUS research

100

Accessing to patients' information in their various referrals

100

Identifying the underlying causes of HUS

100

Improving the diagnosis/treatment of HUS

100

Increasing medical knowledge for HUS management

83

Discovering the infectious sources that cause HUS

87

Supporting health policy for drug import

91

Determining the prevalence of HUS in Iran

100

Enabling international participation in the field of HUS

100

Organizing a campaign for patients to receive any supports

100

Inclusion criteria

Uremia and reduced renal function

100

Microangiopathic hemolytic anemia

100

Reduced platelet count

100

Increased lactic dehydrogenase

100

Negative Coombs test*

44

Diagnosis of HUS by a nephrologist

100

Only patients under-five years*

44

Typical HUS

96

Atypical HUS

96

Data collection

Retrospective

100

Prospective

100

Data collection by the patient's physician

100

Using trained/expert people to collect data

100

Case finding through HUS diagnostic ICD code in medical records*

74

Centralized data collection by a reference center

100

Data quality control

An expert or trained person for data quality control

100

Entering the data of each patient by his/her physician

100

Continuous evaluation of data quality

100

Random verification of data by an expert

100

Determining mandatory fields for data collection

100

Quality control feedback to data collectors

100

Evaluation of data quality by the Iranian Society of Pediatric Nephrology

78

Following data quality guidelines

100

Using of data quality indicators

100

Training courses on data quality

100

Continuous monitoring of incomplete data

100

Data quality control at the moment it enters the registry (auto by software)

100

Data sources

Hospitals (especially pediatric referral centers)

100

Pediatric nephrologist offices

100

Specialized clinics

100

Specialized laboratories (nephrology or genetics)*

52

Urban or rural health centers⁑

13

Research centers

100

Analysis of registry data

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

100

Determining the average values ​​of each variable

100

Determining the ratio of variable values to each other (e.g. the ratio of patients number under five to over five years)*

44

Comparative charts in terms of each variable

100

Registry software specifications

Software quality control when entering data (such as software alert and warning about the admission date before the discharge date)

100

No need for additional typing

100

Automatic calculations when entering data (such as automatic calculation of BSA based on patient height and weight)

100

Enabling to upload patient reports to software (such as genetic test reports)

100

Displaying the status of completing or not completing the patient questionnaire in the main list of patients

100

Possibility of modifying and editing dataا

100

Displaying the range of normal values of laboratory variables

87

Displaying a reminder of the date to follow-up patients in the main list of patients

96

Displaying follow up termination date in the main list of patients

100

Displaying questionnaires editing date in the patient list

100

Using a unique patient identification ID

91

Non displaying patients of the other users in the patient list of physicians

96

Enabling to receive username and password for new users

100

Excel spreadsheet outputs

100

PDF outputs

100

Chart outputs in three shapes: pie, bar, and linear

100

Possibility of default and custom reports

100

Possibility to search for patients based on demographic variables for the user

100

Possibility to register specialists of different hospitals in the registry as a participant

100

Possibility to correspond with the registry admin for participants (via email)

100