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Clinical Database Research
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Registries

Name Of
Registry

Current Number
Of Patients (2015)

122,000Osteoporosis

Inclusion based on multiple criteria:
• Diagnosis of disease by physician (community or hospitals) based on ICD-9 codes
• Diagnosis of major osteoporotic fracture (hip, spine, colle’s, humerous, patella)
• DXA (T-score≤-2.5)
• Treatment: Drug therapy or procedure (hip fracture surgery)
Data for each patient in registry:
• Demographics
• Lab-results (e.g. GFR, Vitamin D)
• Co-morbidities and overlap with inclusion in other disease registries
• Medications & compliance
• Physician visits
• All fracture types
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122,500Diabetes

Inclusion based on multiple criteria:
• Diagnosis of diabetes and lab results (HbA1c; glucose) in the relevant range, or
• Diagnosis and 2 drug purchases (insulin or oral hypoglycemics) within 3 months
• Physicians review list of patients in registry and can remove someone with supporting documentation
Data for each patient in registry:
• Demographics
• Type 1/ Type 2 Diabetes
• Lab results
• Stability of HbA1c; LDL, BP
• Visits – endocrinologist, ophthalmologist, nurse training, etc.
Other characteristics:
• Co-morbidities and overlap with inclusion in other disease registries
• Outcomes, such as amputations, can be obtained from specific patient records
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133,000Cardiovascular Disease

Disease categories included in CVD registry:
• Ischemic Heart Disease (IHD)
• Congestive Heart Failure (CHF)
• Peripheral Vascular Disease (PVD)
• Cerebrovascular Disease (CVD)
• Atrial Fibrillation (AF)
• Cerebrovascular Atherosclerosis
• Other disease ( valve disease, cardiomyopathies, rhythm disorders)
Inclusion Criteria:
• Diagnosis of disease by physician (primary , cardiologist, hospitals) based on ICD-9 codes,
• Treatment/ procedure, e.g. CABG or PCI, based on CPT code
Data for each patient in registry:
• Demographics
• Myocardial Infarction (y/n)
• Lab results (e.g., LDL)
• Co-morbidities
• Medications & compliance
• Hospitalizations
• Physician visits
• Imaging results (e.g., ECHO)
• Inclusion in other disease registries (diabetes, hypertension)

Other characteristics:
Patients' inclusion in the registry is confirmed by the treating physician. Pre-2000 hospital data is included only if supported by later evidence.
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9,620Infertility

Inclusion criteria:
• Diagnosis of infertility, or
• Treatment with in vitro fertilization (IVF), or
• Treatment with other ovarian stimulation procedures, or
• Receipt of donated egg, or
• Treatment with fertility drugs
Data for each patient in registry:
• The number of IVF cycles
• Data can be cross-linked with pregnancy outcomes (e.g. live birth(s), baby's birth-weight, etc.)
• Current status (active or not)
Patient inactivity criteria:
• After age 51
• After giving birth
• One year after stopping treatment
• Departure from the health plan
• Death
Other characteristics:
• At any given time there are approximately 10,000 women actively in the registry
• The registry can make the link between the outcome/success of treatment and the patient's environment, number of children and birth weight of the babies (birth weight not available in all cases)
• The registry can be divided between IVF and non-IVF (i.e., drug) treatment
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See Registry DetailWeight Disorders

Disease categories included in Weight Disorders Patient registry (2011 data):
• Obesity (258,516 patients)
• Overweight (352,473 patients)
• Metabolic Syndrome (350,784 patients)
• Underweight (77,446 patients)
• Malnutrition, age >65 years (12,436)

Inclusion Criteria:
• Adults: BMI
• Children: percentiles

Exclusion Criterion:
• Pregnancy
Data for each patient in registry:
• Demographics
• Latest BMI
• Bariatric surgery
• Lab results (e.g., LDL)
• Blood pressure
• Smoking status
• Nutritionist records
• Co-morbidities
• Medications & compliance
• Hospitalizations
• Physician visits
• Inclusion in other disease registries (diabetes, hypertension)


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276,300Hypertension

Inclusion criteria:
• At least 2 physician's diagnoses or hospital records and at least 2 blood pressure readings of 140/90 mmHg or higher, or
• For cases with abnormal measurement, but no diagnoses, 4 documented measurements are required, where at least 50% of the measurements are systolic>160 mmHg or diastolic>90mmHg, or
• Patients with 6 or more dispensed medications for hypertension
Data for each patient in registry:
• Demographics
• BP measurements
• Medications – prescribed and purchased (compliance)
Other characteristics:
• Co-morbidities and overlap with inclusion in other disease registries
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15,000Schizophrenia/Bipolar

11,222 schizophrenia
6,351 bipolar

Inclusion criteria:
• At least 2 diagnoses of schizophrenia or bipolar disease, or
• More than 2 dispensed anti-psychotic medications, without indication of other neurologic abnormality
Data for each patient in registry:
• Demographics
• Medications – prescribed and purchased (compliance)
Other characteristics:
• Co-morbidities and overlap with inclusion in other disease registries
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84,200Cancer

Inclusion criteria:
• Data obtained from Israel National Cancer Register (INCR), a national database. By law, all pathology results from diagnosed cancer cases must be submitted to the National Register.
Data for each patient in registry:
• Demographics
• ICD-9 classification of disease (including ICDO and morphology codes)
• Histological findings
• Treatment: radiation; chemotherapy, etc.
Other characteristics:
• Prevalence by disease type
• Incidence by disease type
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12,169 Warfarin treatment

Inclusion criteria:
• Continuous Coumadin purchases for at least 30 days
Data for each patient in registry:
• Demographics
• INR
• Drug purchases
Other characteristics:
• Co-morbidities and overlap with inclusion in other disease registries
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48,783Chronic Kidney Disease

Inclusion Criteria:
• Glomerular Filtration Rate (GFR)
• Proteinuria (for early stage)
• Dialysis
• Kidney transplant

Staging:
1. GFR > 60 and proteinuria
2. GFR = 30-59
3. GFR = 15-29
4. GFR <15 or dialysis
Data for each patient in registry:
• Demographics
• Latest GFR
• CKD Stage
• Lab results
• Co-morbidities
• Medications & compliance
• Hospitalizations
• Physician visits
• Kidney ultrasound performance(not results)
• Inclusion in other disease registries (diabetes, hypertension)
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17,223 Chronic Obstructive Pulmonary Disease

Inclusion Criteria:
• Diagnosis of disease by physician (primary and/or pulmonologist) based on ICD-9 codes
• Age >55 years
• Medications – Spiriva , inhalers, anti-cholinergic
• Heavy Smoker
Data for each patient in registry:
• Demographics
• Spirometry performance not results
• Vaccinations
• Smoking status
• Lab results
• Co-morbidities
• Medications & compliance
• Hospitalizations
• Physician visits
• Imaging performance, not results
• Inclusion in other disease registries (diabetes, hypertension)
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7,470Home Care

Inclusion criteria:
• Based on social worker administrative code
Data for each patient in registry:
• Demographics
Other characteristics:
• Co-morbidities and overlap with inclusion in other disease registries
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The registries are built on the basis of computerized coded information arriving from within  the organization, including:

     Demographic information
     Co morbidities
     Lab results
     Medications
     Treatments
     Imaging
     Medical encounters (physicians, paramedical, hospitalizations)

All data are collected daily through central synchronized tables

Automated QA processes are applied to automatic data collection

Inclusion criteria are based on international guidelines if they exist, or are the result of a long process of validation

Validating the specificity and sensitivity of the information using different sets of criteria for the registries  allows constant database  improvement processes

All patients have a single national identity number which enables  contact with other national databases and sources of information

Some registries also include outsource information (e.g., National Cancer Registry data)

Direct communication with primary physicians for case ascertainment and follow–up, allows a high level of validity of the registries



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