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 |