To create a patient record, 6 data elements are mandatory (name, date of birth, sex at birth, OHIP/chart number, diabetes type and diagnosis date). However, once the patient record is created, only 2 data elements are mandatory to create a new visit encounter (date of visit and visit method). Other data collection is dependent on what the Paediatric Diabetes Education Programs (PDEP) is currently collecting and will be discussed further as sites are onboarded. Entering as much data as possible helps to ensure data quality and provincial comparability in the Paediatric Diabetes Registry (PDR). We encourage PDEPs to align collection with the PDR dataset, which was created and reviewed by a variety of healthcare providers across the province.

The ‘pre-populate’ column uses ‘y’ (yes) and ‘n’ (no), to indicate if data elements will pre-populate across encounters.  Pre-population refers to the automatic transfer of data from a previous encounter to a subsequent encounter. It reduces manual data entry (especially for information that is unlikely to change or changes infrequently). Data contributors must review pre-populated data and either verify or update it as necessary. Data elements marked with a 'y' in the pre-populate column will automatically pre-populate with the most recent information entered in the BORN Information System.

 

PDR_ID

 

Data Element name

 

Data Element Definition

 

Picklist lookup

 

Category

Pre-

populate

PDR-0001

PDEP Clinic Name

PDN ID and description for clinic

 

Demo

n

PDR-0002

Family Name

Family name of the patient

 

Demo

y

PDR-0003

Given Names

Up to 4 given names of the patient

 

Demo

y

PDR-0004

Sex at birth

Biological sex

Sex at birth

Demo

y

PDR-0005

Date of Birth

The date the person was born

 

Demo

y

PDR-0006

Patient ID OHIP

OHIP

 

Demo

y

PDR-0007

Chart Number

EMR ID/Chart number

 

Demo

n

PDR-0008

Street Address

Unit Number and street name

 

Demo

y

PDR-0009

City

City Name

 

Demo

y

PDR-0010

Province

Province

 

Demo

y

PDR-0011

Postal Code

Postal code

 

Demo

y

PDR-0012

Country

Country of residence

 

Demo

y

PDR-0013

No Fixed Address

Social services support

Yes No

Demo

y

PDR-0014

Phone Numbers

Assists with matching patient records

 

Demo

y

PDR-0016

Racial Group

The race or racial background of the patient

Racial Group

SDoH

y

PDR-0017

Date of Death

The date on which the patient ceased to live

 

Transition, Transfer, Mortality

y

PDR-0018

Cause of Death

The disease or circumstance which initiated the train of morbid events leading directly to a patient’s death

Cause of death

Transition, Transfer, Mortality

y

PDR-0019

Language with Provider

Language(s) the patient / family feel most comfortable speaking with their healthcare provider

Language with Provider

SDoH

y

PDR-0022

Patient born in Canada

flag

Patient born in Canada

Yes No Unknown Prefer

SDoH

y

PDR-0023

Patient arrival in Canada

Patient length of time in Canada

Arrival In Canada

SDoH

y

PDR-0024

Private insurance status

Additional supplemental or private health insurance

 

SDoH

y

PDR-0025

Government insurance

Indicate which government insurance the patient is eligible for

Government insurance

SDoH

y

PDR-0026

Primary Care Provider

The patient's primary care provider

 

SDoH

y

PDR-0027

Date of Visit

The date the person attended the diabetes clinic for a consult

 

System

n

PDR-0029

Visit Method

Describe the visit (e.g. virtual - includes video or telephone), in-person

Visit Method

System

n

PDR-0031

Attending Providers

Indicate all the provider(s) the patient had a visit with

Attending Providers

System

n

PDR-0032

Diabetes Type

The primary type of diabetes the patient has been diagnosed with

Diabetes Type

Header

y

PDR-0033

Date of Diagnosis

The date the person was first diagnosed with diabetes

 

Header

y

PDR-0034

DKAHHS At Diagnosis

Indicates whether the person was diagnosed with Diabetic ketoacidosis or hyperglycemia hyperosmolar syndrome (HHS) at the time of diagnosis of diabetes.

 

HHS criteria definition: Plasma glucose >33.3mmol/L, serum osmolality >330 mOsmol/kg, serum bicarbonate >15 mmol/L, venous pH > 7.25, absence or low ketones

 

DKA defined as (ISPAD 2022);

-Hyperglycemia (BG >11mmol/L)

-Venous Ph <7.33 or HC03 <18mmol/L

-Ketonemia ≥3mmol/L or ketonuria ≥2+(moderate to large)

DKAHHS At Diagnosis

Initial diagnosis

y

PDR-0035

DKA At Diagnosis pH

The patients pH level if DKA at diagnosis

 

Initial diagnosis

y

PDR-0036

DKA AtDiagnosis

Bicarbonate HCO3

The patients HCO3 level if DKA at diagnosis

 

Initial diagnosis

y

PDR-0037

HbA1C AtDiagnosis

The patients HbA1c measure in NGSP units at the time of diagnosis

One decimal; if >14% report as 14.1%

 

Initial diagnosis

y

PDR-0038

Diabetes Autoantibodies

Completed

Indicate if the patient auto-antibody status was completed

 

Initial diagnosis

y

PDR-0040

Insulin delivery

Describe how insulin is being administered

Insulin delivery

Diabetes Regime

n

PDR-0041

Type of Pump

The type of insulin pump used in the treatment of diabetes

Type Of Pump

Diabetes Regime

n

PDR-0042

Injection frequency

 Frequency of insulin injections

Injection Frequency

Diabetes Regime

n

PDR-0043

Total Daily Insulin Dose

The average total number of units of insulin the person injects on a usual day (average TDD past 2 weeks)

 

Diabetes Regime

n

PDR-0044

Reason for not using

pump or MDI

External barriers influencing ability to use MDI or insulin pump

Reason for not using pump or MDI

Diabetes Regime

n

PDR-0045

Glucose monitoring

device

Indicate the type of glucose monitoring device at time of visit and

consistently used since last visit

Glucose Monitoring Device Type

Quarterly Health Check

n

PDR-0046

rtCGM/isCGM(FGM)

Payment

If the patient is using a CGM/FGM, please indicate how they are

paying for the device

CGM/FGM payment

SDoH

y

 

PDR-0047

 

rtCGM/isCGM(FGM) Usage

An estimate of the percent of time the patient has spent using a CGM/FGM device since the last visit. If use is <80%, CGM/FGM report should not be included (PDR-0048 to PDR-0053)

 

CGM/FGM Usage

 

Quarterly Health Check

 

n

 

PDR-0048

rtCGM/isCGM(FGM) Time in Range

The percentage of time in the last 2 weeks the person’s sensor glucose has been in the target range between 3.9 and 10.0 mmol/L

 

 

Quarterly Health Check

 

n

 

PDR-0049

rtCGM/isCGM(FGM) Time 3.0 3.8

The percentage of time in the last 2 weeks the person’s sensor glucose has been between 3.0 and 3.8 mmol/L, inclusive

 

 

Quarterly Health Check

 

n

PDR-0050

rtCGM/isCGM(FGM)

Time 2.9 or less

The percentage of time in the last 2 weeks the person’s sensor glucose has been below 3.0 mmol/L

 

Quarterly Health Check

n

PDR-0051

rtCGM/isCGM(FGM)

Time 10.1 or more

The percentage of time in the last 2 weeks the person’s sensor glucose has been above 10.0 mmol/L

 

Quarterly Health Check

n

PDR-0052

rtCGM/isCGM(FGM)

Glucose Mean

The average patients sensor glucose in the last 14 days, reported by CGM/FGM

 

Quarterly Health Check

n

PDR-0053

rtCGM/isCGM(FGM)

Glucose SD

The standard deviation reported in the last 14 days

 

Quarterly Health Check

n

PDR-0054

Measured HbA1C

Patient's HbA1c measure in NGSP units at time of visit. One decimal; if >14% report as 14.1%

 

Quarterly Health Check

n

PDR-0055

Date of HbA1C

Date of measured HbA1C

 

Quarterly Health Check

n

PDR-0056

HbA1C Method

Method of HbA1C

Method Of A1C

Quarterly Health Check

n

 

PDR-0057

 

Height

The patient’s body height measured in centimeters (including 1 decimal point) at the time of visit. Height is an important anthropometric measure and needed for calculation of body mass index

 

 

Quarterly Health Check

 

n

 

PDR-0058

 

Weight

The patient’s body weight measured in kilograms. Weight is an important anthropometric measure and needed for calculation of body mass index

 

 

Quarterly Health Check

 

n

PDR-0059

Systolic Blood Pressure

The person's systolic blood pressure, measured in millimeters of mercury (mmHg)

 

Quarterly Health Check

n

PDR-0060

Diastolic Blood Pressure

The person's diastolic blood pressure, measured in millimeters of mercury (mmHg)

 

Quarterly Health Check

n

PDR-0061

Biguanides

Patient taking Biguanides (e.g.Metformin)

 

Diabetes Regime

y

PDR-0062

DPP-4 Inhibitors

Patient taking a DPP-4 inhibitor (e.g. linagliptin, sitagliptin,

saxagliptin, alogliptin)

 

Diabetes Regime

y

PDR-0063

GLP-1 Receptor Agonists

Patient taking a GLP-1 agonist (e.g. liraglutide, dulaglutide,

semaglutide, exenatide, lixisenatide)

 

Diabetes Regime

y

PDR-0064

SGLT2 inhibitors

Patient taking a SGLT2 inhibitor (e.g. canagliflozin, empagliflozin, dapagliflozin)

 

Diabetes Regime

y

PDR-0065

Insulin Secretagogues

Patient taking an insulin secretagogue [e.g. (meglitinides, sulfonylureas) (repaglinide, glyburide, gliclizide, glimepiride)]

 

Diabetes Regime

y

 

PDR-0066

 

Severe Hypoglycaemia Episodes since last visit

The number of episodes of severe hypoglycaemia experienced by the patient since last visit. Severe hypoglycaemia not based on BG, but if the patient required assistance from another person to treat

 

 

Adverse events

 

n

PDR-0067

ER visit severe low

ER visit associated with the severe low

 

Adverse events

n

PDR-0068

DKA LastVisit Episodes

The number of episodes of DKA (not at diagnosis) since last visit

 

Adverse events

n

PDR-0073

date of thyroid test

Date applies to TSH level and perioxidase antibody

 

Autoimmune conditions

y

 

PDR-0074

 

TSH level

The thyroid- stimulating hormone level Measured in the patient’s blood in mU/L if TSH is at the lowest of your assay, minus 0.001 (i.e. if <0.01 report as 0.009) mU/L

 

 

Autoimmune conditions

 

y

 PDR-0075

Thyroid peroxidase antibody

What were the results of the patient's Thyroid peroxidase antibodies test?

 

Positive Negative Unknown Not Tested

 

Autoimmune conditions

 

y

 PDR-0076

Thyroid anti- thyroglobulin antibody

What was the result of the patients anti-thyroglobulin antibodies test?

 

Positive Negative Unknown Not Tested

 

Autoimmune conditions

 

y

PDR-0077

Autoimmune Hypothyroidism

Has the patient been diagnosed with autoimmune hypothyroidism? (a condition where the immune system attacks the thyroid gland and reduces its ability to produce thyroid hormones)

 

autoimmune hypothyroidism

 

Autoimmune conditions

 

y

PDR-0078

Autoimmune Hyperthyroidism

The condition that occurs due to excessive production of thyroid hormones by the thyroid gland

 

Autoimmune conditions

y

PDR-0079

Primary adrenal insufficiency

Primary adrenal insufficiency, also known as Addison’s disease, is a rare long-term endocrine disorder causing adrenal insufficiency

 

 

Autoimmune conditions

 

y

PDR-0080

Primary adrenal

insufficiency Date

Date of Auto-immune adrenal insufficiency (Addison's Disease)

 

Autoimmune conditions

y

PDR-0081

Celiac disease

Celiac disease is an inherited autoimmune disorder that causes problems in the digestive system

 

Autoimmune conditions

y

PDR-0082

Celiac disease status

If screening is positive indicate if celiac disease is confirmed

 

Autoimmune conditions

y

PDR-0083

Celiac diagnosis date

Date of diagnosis of celiac disease

 

Autoimmune conditions

y

 

PDR-0084

 

MASLD

A diagnosis of MASLD (Previous term was NAFLD) is a liver problem; it is the most common form of chronic liver disease, affecting about 25% of the world’s population

 

 

Comorbid conditions

 

y

PDR-0085

MASLD Date

Date of diagnosis of MASLD

 

Comorbid conditions

y

PDR-0086

PCOS

A diagnosis of polycystic ovary syndrome, a common hormonal condition that affects women and people assigned female at birth (AFAB) of reproductive age

 

 

Comorbid conditions

 

y

PDR-0087

PCOS Date

Date of diagnosis of PCOS

 

Comorbid conditions

y

PDR-0088

OSA

A diagnosis of obstructive sleep apnea is the most common sleep-related breathing disorder.

 

Comorbid conditions

y

PDR-0089

OSA Date

Date of diagnosis of OSA

 

Comorbid conditions

y

PDR-0090

Antihypertensive agents

Patient prescribed antihypertensive agents?

 

Diabetes related complications

y

PDR-0091

Lipid lowering agent

Patient taking a lipid lowering agent?

 

Diabetes related complications

y

 PDR-0092

 Date of lipid Test

The date the lab test was completed. This date applies to Total cholesterol, Trigl, HDL, LDL

 

1- T1D at 11yr with 2-5 diabetes duration and then every 3 years

2- T2D at diagnosis when BG has stabilized and then yearly

 

 

 

Diabetes related complications

 

 

y

PDR-0093

Total Cholesterol

Patient's total cholesterol measure in mmol/L

 

Diabetes related complications

y

PDR-0094

Triglycerides

Patient's triglycerides measured in mmol/L

 

Diabetes related complications

y

PDR-0095

HDL

Patient's High Density Lipoproteins measured in mmol/L

 

Diabetes related complications

y

PDR-0096

LDL

Patient's Low Density Lipoproteins measured in mmol/L

 

Diabetes related complications

y

PDR-0097

non-HDL-C

non-HDL-C

 

Diabetes related complications

y

 

PDR-0098

 

ACR AER Date

The date the kidney function test was completed

 

1- T1D should start at puberty or from age 11yr, whichever is

    earlier,  with 2-5yr diabetes duration and repeated yearly

    thereafter

2- T2D at diagnosis and then yearly

 

 

 

Diabetes related complications

 

 

y

PDR-0099

ACR Ratio

Patient's urine albumin creatinine ratio (ACR)

 

Diabetes related complications

y

PDR-0100

AER Rate

The patient urine ablumin excretion rate

 

Diabetes related complications

y

PDR-0101

Albuminaria

Persistent albuminuria is confirmed by finding 2 or all of 3 urine samples abnormal (≥3mg/mmol) over a 3-6 month period (ISPAD 2022)

 

 

Diabetes related complications

 

y

PDR-0102

ALT

Patient's alanine aminotransferase level measured in IU/L

 

Diabetes related complications

y

PDR-0103

date of ALT Test

Date of patient's ALT test

 

Diabetes related complications

y

PDR-0104

AST

Patient's Aspartate aminotransferase (AST) level measured in IU/L

 

Diabetes related complications

y

PDR-0105

date of AST Test

Date of patient's Aspartate aminotransferase (AST) test

 

Diabetes related complications

y

PDR-0106

Referral to adult care

provider

Referral to adult provider sent

Referral to adult care provider

Transition, Transfer, Mortality

y

PDR-0107

Transfer To

To gather information on transfer and potentially avoid lost to care

Transfer To

Transition, Transfer, Mortality

n

PDR-0108

Last visit prior to

transition

To assess length of time from referral to patient being seen and avoid lost to care

 

Transition, Transfer, Mortality

n

PDR-0109

Date seen by adult

provider

Date seen by adult provider

 

Transition, Transfer, Mortality

n

PDR-0110

Retinopathy Screened

Has retinopathy screening been performed in the last 12 months?

 

1- T1D 11yr with 2-5years diabetes duration and then every 2-3yrs

2- At diagnosis (when BG's have stabilized) and then every 2-3yr

 

 

Diabetes related complications

 

y

PDR-0111

Retinopathy Screened date

Date of last eye exam in the last 12 month

 

Diabetes related complications

y

PDR-0112

Diabetic Retinopathy or Maculopathy

Indicate if a patient has NPDR – microaneurysms, intraretinal haemorrhages and/or retinal hypoperfusion

 

Indicate if a patient has PDR – neovascularisation - new retinal blood vessels

 

Indicate if a patient has Maculopathy - leakage of vessels close to the centre of the macula leading to macular oedema

 

 

 

Diabetes related complications

 

 

y

PDR-0113

Diabetic Retinopathy or

Maculopathy Date

Date of Diabetic Retinopathy or Maculopathy

 

Diabetes related complications

y

PDR-0114

Neuropathy Screened

Neuropathy screening performed?

 

1- T1D at 11yr with 2-5 diabetes duration and then annually

2- T2D at diagnosis and then yearly

 

Yes No

Not Applicable

Unknown

 

Diabetes related complications

 

y

PDR-0115

Psychological Disorder Screening

Was screening for signs of psychological distress and/or symptoms of common mental health disorders performed at this visit?

 

 

Mental health

 

y

PDR-0116

Psychological Disorder Screening Date

Date of screening for signs of psychological distress and/or symptoms of common mental health disorders performed at this visit

 

 

Mental health

 

y

PDR-0117

Psychological Disorder

Screening Tool

Indicate the name of the tool used to screen for psychological

disorders

 

Mental health

y

PDR-0118

Mental Health Diagnosis

List all diagnosed mental health conditions. Diagnosis must be made by appropriate health care provider and not based on symptoms. Can be self-reported or report from diagnostic physician.

 

Mental Health diagnosis

 

Mental health

 

y

PDR-0119

Psychological Disorder

Screening Actions

What actions were taken based on the screening (check all that apply)?

Psychological disorder Screening Actions

Mental health

y

PDR-0120

Psychological Health Treatment

Indicate whether the patient is currently engaged in mental health services

 

If yes, please specify if the patient is/has received treatment

 

Psychological health treatment

 

Mental health

 

n

PDR-0121

Rationing supplies

Describes if the patient is rationing medications and/or diabetes supplies (e.g. needles, insulin, pump, CGM, etc.)

Rationing supplies

SDoH

n

PDR-0122

Basic needs

Basic needs can include one or more of the following: housing, food, utility bills, transportation, internet & phone, clothing.

 

Basic needs

 

SDoH

 

n

PDR-0123

Disability

Patient's disability

Disability

SDoH

n

PDR-0124

Staff Roles

Indicate point code for staff in the diabetes clinic. (nursing, dietitian, social worker, psychologist, pharmacy tech, clerical etc.)

 

Attending Provider

 

Org Profile

 

n

 

PDR-0125

 

Staff Roles FTE

Indicate FTE (point code) for staff in the diabetes clinic. (nursing, dietitian, social worker, psychologist, pharmacy tech, clerical etc.)

 

 

Org Profile

 

n

PDR-0126

Insulin pump wait time

Indicate the wait time in weeks from decision for pump

therapy/eligibility, to pump initiation

 

Org Profile

n

PDR-0127

Anti-GAD status

 Anti-GAD status

Positive Negative

Initial diagnosis

y

PDR-0128

Anti-GAD status Date

 Date anti-GAD test was completed

 

Initial diagnosis

y

PDR-0129

Anti-Insulin status

 Anti-Insulin status

Positive Negative

Initial diagnosis

y

PDR-0130

Anti-Insulin status Date

 Date Anti-Insulin test was completed

 

Initial diagnosis

y

PDR-0131

Anti-Islet Cell status

 Anti-Islet Cell status

Positive Negative

Initial diagnosis

y

PDR-0132

Anti-Islet Cell status Date

 Date Anti-Islet Cell test was completed

 

Initial diagnosis

y

PDR-0133

Transition and care

policy/guide

Does the clinic have a transition and care policy/guide?

 

Org Profile

n

PDR-0134

Transition tracking and

monitoring

Does the clinic have established criteria and a process for identifying transition-aged youth?

 

Org Profile

n

PDR-0135

Transition Readiness assessments

Does the clinic conduct regular transition readiness assessments, beginning at age 14 to 16, to identify and discuss with youth and parent/caregiver their needs for self-care and how to use health care services?

 

 

Org Profile

 

n

PDR-0136

Osmolality At Diagnosis

 Initial osmolality value at time of diagnosis assessment

 

Initial diagnosis

y

PDR-0137

Serum Glucose

At Diagnosis

 Initial serum glucose at time of diagnosis assessment

 

Initial diagnosis

y

PDR-0138

Other Oral Diabetes

Medication

 Other anti-hyperglycemic medication

 

Diabetes Regime

y

PDR-0139

HHS Last Visit Episodes

The number of episodes of hyperglycemia hyperosmolar syndrome (not at diagnosis) since last visit

 

Adverse events

n

PDR-0140

Total Daily Basal Dose

The average total daily basal insulin dose administered in the last 14 days

 

Diabetes Regime

n