Retention Implementation Guide
2.0.0 - ci-build
Retention Implementation Guide - Local Development build (v2.0.0) built by the FHIR (HL7® FHIR® Standard) Build Tools. See the Directory of published versions
Contents:
This page provides a list of the FHIR artifacts defined as part of this implementation guide.
Codesystems used for RETENTION variables
| Sex Codesystem |
Code system with input values for Sex |
| Ethnicity Codesystem |
Code system with input values for Ethnicity |
| Country of residence Codesystem |
Code system with input values for Country of residence |
| Marital Status Codesystem |
Code system with input values for Marital Status |
| ABO blood group Codesystem |
Code system with input values for ABO blood group |
| Highest level of education Codesystem |
Code system with input values for Highest level of education |
| Employment status Codesystem |
Code system with input values for Employment status |
| Thyroid disease Codesystem |
Code system with input values for Thyroid disease |
| Smoker Codesystem |
Code system with input values for Smoker |
| Severe alcohol intake Codesystem |
Code system with input values for Severe alcohol intake |
| Cardiomyopathy Codesystem |
Code system with input values for Cardiomyopathy |
| NYHA class Codesystem |
Code system with input values for NYHA class |
| Previous coronary revascularization Codesystem |
Code system with input values for Previous coronary revascularization |
| Atrial fibrillation Codesystem |
Code system with input values for Atrial fibrillation |
| Previous valvular intervention Codesystem |
Code system with input values for Previous valvular intervention |
| Ventricular stimulation Codesystem |
Code system with input values for Ventricular stimulation |
| Type of LVAD Codesystem |
Code system with input values for Type of LVAD |
| Intention of LVAD Codesystem |
Code system with input values for Intention of LVAD |
| Stroke after LVAD Codesystem |
Code system with input values for Stroke after LVAD |
| CMV risk profile Codesystem |
Code system with input values for CMV risk profile |
| Previous rejection episodes Codesystem |
Code system with input values for Previous rejection episodes |
| Allograft vasculopathy Codesystem |
Code system with input values for Allograft vasculopathy |
| Medication Adherence Codesystem |
Code system with input values for Medication Adherence |
| Type of visit Codesystem |
Code system with input values for Type of visit |
| Type death Codesystem |
Code system with input values for Type death |
| Type of CV admission Codesystem |
Code system with input values for Type of CV admission |
| Type of rejection Codesystem |
Code system with input values for Type of rejection |
| Type of rejection treatment Codesystem |
Code system with input values for Type of rejection treatment |
| Dyspnea Codesystem |
Code system with input values for Dyspnea |
| Angina Codesystem |
Code system with input values for Angina |
| Jugular Venous Pressure Codesystem |
Code system with input values for Jugular Venous Pressure |
| Peripheral edema Codesystem |
Code system with input values for Peripheral edema |
| Evaluation Codesystem |
Code system with input for patient's evaluation |
| Conduction delay Codesystem |
Code system with input values for Conduction delay |
| Troponin Codesystem |
Code system with input values for Troponin |
| Severity Codesystem |
Code system with input values for Severity |
| MR Aetiology Codesystem |
Code system with input values for MR Aetiology |
| VAD alarm Codesystem |
Code system with input values for VAD alarm |
| CPET Codesystem |
Code system with input values for CPET |
| Questionnaire Symptoms answers Codesystem |
Code system with the answers for the Symptoms Questionnaire |
| Category Codesystem |
Code system with input values for Category |
| Medication Codesystem |
Code system for Medication groups |
| Helper Codesystem |
Code system with helper codes to distinguish between similar FHIR resources |
| Retention Codesystem |
Code system to describe entities that can not be described using standard Code systems |
Example of RETENTION patient including non-sensitive demographics
| Patient Example |
Example Patient for Retention project |
Examples of patient data gathered during baseline visit
| Arterial Hypertension |
Arterial Hypertension |
| Dyslipidemia |
Dyslipidemia |
| Diabetes Mellitus type 1 |
Diabetes Mellitus type 1 |
| Diabetes Mellitus type 2 |
Diabetes Mellitus type 2 |
| COPD |
COPD |
| Renal insufficiency |
Renal insufficiency |
| Estimated glomerular filtration rate |
Estimated glomerular filtration rate |
| Cerebrovascular disease |
Cerebrovascular disease |
| Peripheral artery disease |
Peripheral artery disease |
| Aortic aneurysm |
Aortic aneurysm |
| Venous thromboembolism / pulmonary embolism |
Venous thromboembolism / pulmonary embolism |
| Carotid Artery Disease |
Carotid Artery Disease |
| Cancer |
Cancer |
| Anemia |
Anemia |
| Thyroid disease |
Thyroid disease |
| Benign Prostatic hyperplasia |
Benign Prostatic hyperplasia |
| Smoker |
Smoker |
| Severe alcohol intake |
Severe alcohol intake |
| Date HF diagnosis |
Date HF diagnosis |
| Cardiomyopathy |
Cardiomyopathy |
| NYHA class |
NYHA class |
| Number of HF admissions during the previous year |
Number of HF admissions during the previous year |
| Date HF admission |
Date HF admission |
| Coronary artery disease |
Coronary artery disease |
| Previous coronary revascularization |
Previous coronary revascularization |
| Brady-arrhythmias / AV block |
Brady-arrhythmias / AV block |
| Ventricular tachycardia / Ventricular fibrillation / Resuscitated sudden death |
Ventricular tachycardia / Ventricular fibrillation / Resuscitated sudden death |
| Atrial fibrillation |
Atrial fibrillation |
| ICD |
ICD |
| CRT |
CRT |
| Pacemaker |
Pacemaker |
| Previous valvular intervention |
Previous valvular intervention |
| Previous cardiac surgery |
Previous cardiac surgery |
| Ventricular stimulation |
Ventricular stimulation |
| Date LVAD implant |
Date LVAD implant |
| Type of LVAD |
Type of LVAD |
| Intention of LVAD |
Intention of LVAD |
| Stroke after LVAD implantation |
Stroke after LVAD implantation |
| Date stroke |
Date stroke |
| Gastrointestinal bleeding after LVAD |
Gastrointestinal bleeding after LVAD |
| Date GI bleeding |
Date GI bleeding |
| Driveline infections |
Driveline infections |
| Date DL infection |
Date DL infection |
| Right heart failure - One month after implantation |
Right heart failure - One month after implantation |
| Right heart failure - At the time of implantation |
Right heart failure - At the time of implantation |
| Sustained ventricular tachicardia one month after implantation |
Sustained ventricular tachicardia one month after implantation |
| Date heart transplant |
Date heart transplant |
| CMV risk profile |
CMV risk profile |
| CMV infection after transplant |
CMV infection after transplant |
| Previous opportunistic infections |
Previous opportunistic infections |
| Previous rejection episodes |
Previous rejection episodes |
| Previous antibody mediated rejection |
Previous antibody mediated rejection |
| Allograft vasculopathy |
Allograft vasculopathy |
Examples of patient real world data gathered by home devices
| Diastolic blood pressure - BP device |
Diastolic blood pressure - BP device |
| Systolic blood pressure - BP device |
Systolic blood pressure - BP device |
| Heart Rate - BP Device |
Heart Rate - BP Device |
| Heart Rate - Oximeter |
Heart Rate - Oximeter |
| Heart Rate - Average - Smartwatch |
Heart Rate - Average - Smartwatch |
| Heart Rate - Maximum - Smartwatch |
Heart Rate - Maximum - Smartwatch |
| Heart Rate - Minimum - Smartwatch |
Heart Rate - Minimum - Smartwatch |
| Peripheral capillary oxygen saturation - Oximeter |
Peripheral capillary oxygen saturation - Oximeter |
| Body weight - Weightscale |
Body weight - Weightscale |
| Body Temperature - Smartphone |
Body Temperature - Smartphone |
| Steps - Smartwatch |
Steps - Smartwatch |
| Calories - Smartwatch |
Calories - Smartwatch |
| Distance - Smartwatch |
Distance - Smartwatch |
| Floors climbed - Smartwatch |
Floors climbed - Smartwatch |
| Deep sleep time - Smartwatch |
Deep sleep time - Smartwatch |
| Light sleep time - Smartwatch |
Light sleep time - Smartwatch |
| REM sleep - Smartwatch |
REM sleep - Smartwatch |
| Sleep interruptions - Smartwatch |
Sleep interruptions - Smartwatch |
| Medication adherence - Smartphone |
Medication adherence - Smartphone |
Example of patient visit resource
| Patient Visit |
Patient Visit Example |
Examples of patient events recorded during the study
| Event Death |
Event Death |
| Event HF decompensation needing iv. Diuretic |
Event HF decompensation needing iv. Diuretic |
| Event HF decompensation needing inotropes |
Event HF decompensation needing inotropes |
| Event Heart failure related visit |
Heart failure related visit |
| Event HF Admission |
Event HF Admission |
| Event CV admission other than HF |
Event CV admission other than HF |
| Event Other non-CV admissions |
Event Other non-CV admissions |
| Event Other non-CV visit |
Event Other non-CV visit |
| Event Patient category change |
Event Patient category change |
| Event Drive line infection |
Event Drive line infection |
| Event Drive line Reinfection |
Event Drive line Reinfection |
| Event Infection in other LVAD components |
Event Infection in other LVAD components |
| Event Included in heart transplant list due to drive line infections |
Event Included in heart transplant list due to drive line infections |
| Event Rejection needing treatment in HT |
Event Rejection needing treatment in HT |
| Event CMV infection requiring medical treatment |
Event CMV infection requiring medical treatment |
| Event Infection |
Event Infection |
Examples of medication records prescribed to patients during the study
| ACEi Captopril |
ACEi Captopril |
| ACEi Cilazapril |
ACEi Cilazapril |
| ACEi Enalapril |
ACEi Enalapril |
| ACEi Fosinopril |
ACEi Fosinopril |
| ACEi Lisinopril |
ACEi Lisinopril |
| ACEi Perindopril |
ACEi Perindopril |
| ACEi Quinapril |
ACEi Quinapril |
| ACEi Ramipril |
ACEi Ramipril |
| ACEi Trandolapril |
ACEi Trandolapril |
| ARBs Candesartan |
ARBs Candesartan |
| ARBs Losartan |
ARBs Losartan |
| ARBs Valsartan |
ARBs Valsartan |
| ARBs Olmesartan |
ARBs Olmesartan |
| Sacubitril - Valsartan |
Sacubitril - Valsartan |
| Beta-blocker Bisoprolol |
Beta-blocker Bisoprolol |
| Beta-blocker Carvedilol |
Beta-blocker Carvedilol |
| Beta-blocker Metoprolol |
Beta-blocker Metoprolol |
| Beta-blocker Nebivolol |
Beta-blocker Nebivolol |
| MRA Spironolactone |
MRA Spironolactone |
| MRA Eplerenone |
MRA Eplerenone |
| SGLT2i Canagliflozin |
SGLT2i Canagliflozin |
| SGLT2i Dapagliflozin |
SGLT2i Dapagliflozin |
| SGLT2i Empagliflozin |
SGLT2i Empagliflozin |
| SGLT2i Ertugliflozin |
SGLT2i Ertugliflozin |
| SGLT2i Sotagliflozin |
SGLT2i Sotagliflozin |
| Ivabradine |
Ivabradine |
| Vericiguat |
Vericiguat |
| Digoxin |
Digoxin |
| Vasodilators Hydralazine |
Vasodilators Hydralazine |
| Vasodilators Isosorbide dinitrate |
Vasodilators Isosorbide dinitrate |
| Antiplatelets Aspirin |
Antiplatelets Aspirin |
| Antiplatelets Clopidogrel |
Antiplatelets Clopidogrel |
| Antiplatelets Prasugrel |
Antiplatelets Prasugrel |
| Antiplatelets Ticagrelor |
Antiplatelets Ticagrelor |
| Anticoagulants Acenocoumarol |
Anticoagulants Acenocoumarol |
| Anticoagulants Apixaban |
Anticoagulants Apixaban |
| Anticoagulants Dabigatran |
Anticoagulants Dabigatran |
| Anticoagulants Edoxaban |
Anticoagulants Edoxaban |
| Anticoagulants Rivaroxaban |
Anticoagulants Rivaroxaban |
| Anticoagulants Warfarin |
Anticoagulants Warfarin |
| Anticoagulants Phenprocoumon |
Anticoagulants Phenprocoumon |
| Loop diuretics Bumetanide |
Loop diuretics Bumetanide |
| Loop diuretics Furosemide |
Loop diuretics Furosemide |
| Loop diuretics Torasemide |
Loop diuretics Torasemide |
| Thiazides Bendroflumethiazide |
Thiazides Bendroflumethiazide |
| Thiazides Chlortalidone |
Thiazides Chlortalidone |
| Thiazides Hydrochlorothiazide |
Thiazides Hydrochlorothiazide |
| Thiazides Metolazone |
Thiazides Metolazone |
| Thiazides Indapamide |
Thiazides Indapamide |
| Potassium sparing diuretics Amiloride |
Potassium sparing diuretics Amiloride |
| Potassium sparing diuretics Triamterene |
Potassium sparing diuretics Triamterene |
| Potassium supplements Citrate |
Potassium supplements Citrate |
| Potassium supplements Phosphate |
Potassium supplements Phosphate |
| Potassium supplements Aspartate |
Potassium supplements Aspartate |
| Potassium supplements Bicarbonate |
Potassium supplements Bicarbonate |
| Potassium supplements Gluconate |
Potassium supplements Gluconate |
| Potassium binders Sodium zirconium cyclosilicate |
Potassium binders Sodium zirconium cyclosilicate |
| Potassium binders Patiromer |
Potassium binders Patiromer |
| Potassium binders Sodium polystyrene sulfonate |
Potassium binders Sodium polystyrene sulfonate |
| Statins Atorvastatin |
Statins Atorvastatin |
| Statins Fluvastatin |
Statins Fluvastatin |
| Statins Lovastatin |
Statins Lovastatin |
| Statins Pravastatin |
Statins Pravastatin |
| Statins Pitavastatin |
Statins Pitavastatin |
| Statins Rosuvastatin |
Statins Rosuvastatin |
| Statins Simvastatin |
Statins Simvastatin |
| Ezetimibe |
Ezetimibe |
| Other Antihyperlipidemic Drugs Fibrates |
Other Antihyperlipidemic Drugs Fibrates |
| Other Antihyperlipidemic Drugs Fish oil |
Other Antihyperlipidemic Drugs Fish oil |
| Other Antihyperlipidemic Drugs PCSK9 |
Other Antihyperlipidemic Drugs PCSK9 |
| Calcium Channel Blockers Amlodipine |
Calcium Channel Blockers Amlodipine |
| Calcium Channel Blockers Diltiazem |
Calcium Channel Blockers Diltiazem |
| Calcium Channel Blockers Felodipine |
Calcium Channel Blockers Felodipine |
| Calcium Channel Blockers Lacidipine |
Calcium Channel Blockers Lacidipine |
| Calcium Channel Blockers Nifedipine |
Calcium Channel Blockers Nifedipine |
| Calcium Channel Blockers Verapamil |
Calcium Channel Blockers Verapamil |
| Amiodarone |
Amiodarone |
| Other antiarrhythmics Flecainide |
Other antiarrhythmics Flecainide |
| Other antiarrhythmics Sotalol |
Other antiarrhythmics Sotalol |
| Other antiarrhythmics Mexiletine |
Other antiarrhythmics Mexiletine |
| PPI |
PPI |
| Steroids Cortisone |
Steroids Cortisone |
| Steroids Dexamethasone |
Steroids Dexamethasone |
| Steroids Hydrocortisone |
Steroids Hydrocortisone |
| Steroids Methylprednisolone |
Steroids Methylprednisolone |
| Steroids Prednisolone |
Steroids Prednisolone |
| Steroids Prednisone |
Steroids Prednisone |
| Tacrolimus Immediate release (Prograft) |
Tacrolimus Immediate release (Prograft) |
| Tacrolimus Slow release (Advagraft) |
Tacrolimus Slow release (Advagraft) |
| Tacrolimus Extended release (Envarsus) |
Tacrolimus Extended release (Envarsus) |
| Everolimus |
Everolimus |
| Ciclosporin |
Ciclosporin |
| Mycophenolate mofetil |
Mycophenolate mofetil |
| Mycophenolate sodium |
Mycophenolate sodium |
| Antibiotics |
Antibiotics |
| Insulin |
Insulin |
| Other Antidiabetics Metformin |
Other Antidiabetics Metformin |
| Other Antidiabetics Thiazolidinedione |
Other Antidiabetics Thiazolidinedione |
| Other Antidiabetics Sulfonylurea |
Other Antidiabetics Sulfonylurea |
| Other Antidiabetics Glucagon-like peptide-1 receptor agonist |
Other Antidiabetics Glucagon-like peptide-1 receptor agonist |
| Other Antidiabetics Dipeptidyl peptidase-4 inhibitors |
Other Antidiabetics Dipeptidyl peptidase-4 inhibitors |
| Other Antidiabetics Alpha-glucosidase inhibitor |
Other Antidiabetics Alpha-glucosidase inhibitor |
| Other drugs |
Other drugs |
Examples of clinica data collected during the study
| Dyspnea - Clinical Data |
Dyspnea - Clinical Data |
| Angina |
Angina |
| Syncope |
Syncope |
| Fatigue - Clinical Data |
Fatigue - Clinical Data |
| Pulmonary rales |
Pulmonary rales |
| Jugular venous vressure |
Jugular venous vressure |
| Pleural effusion |
Pleural effusion |
| Hepatomegaly |
Hepatomegaly |
| Ascites |
Ascites |
| Peripheral edema |
Peripheral edema |
| S3 |
S3 |
| S4 |
S4 |
| Peripheral hypoperfusion |
Peripheral hypoperfusion |
| Peripheral capillary oxygen saturation - Clinical Data |
Peripheral capillary oxygen saturation - Clinical Data |
| Body weight - Clinical Data |
Body weight - Clinical Data |
| Body Temperature - Clinical Data |
Body Temperature - Clinical Data |
| Diastolic blood pressure - Clinical Data |
Diastolic blood pressure - Clinical Data |
| Systolic blood pressure - Clinical Data |
Systolic blood pressure - Clinical Data |
| Heart rate - Clinical Data |
Heart rate - Clinical Data |
| Evaluation - Clinical Data |
Evaluation - Clinical Data |
Examples of electrocardiography data collected during the study
| Sinus rhythm |
Sinus rhythm |
| Heart rate - ECG |
Heart rate - ECG |
| PQ - PR |
PQ - PR |
| QRS |
QRS |
| QT |
QT |
| Conduction delay |
Conduction delay |
Examples of laboratory data collected during the study
| Hemoglobin |
Hemoglobin |
| Haematocrit |
Haematocrit |
| White Blood Cells |
White Blood Cells |
| Platelets |
Platelets |
| Urea |
Urea |
| Creatinine |
Creatinine |
| Uric acid |
Uric acid |
| Glucose |
Glucose |
| Sodium |
Sodium |
| Potassium |
Potassium |
| Magnesium |
Magnesium |
| Cholesterol |
Cholesterol |
| Triglycerides |
Triglycerides |
| HDL |
HDL |
| LDL |
LDL |
| ALAT |
ALAT |
| ASAT |
ASAT |
| gGT |
gGT |
| LDH |
LDH |
| ALP |
ALP |
| Tot prot |
Tot prot |
| ALB |
ALB |
| Nt pro BNP |
Nt pro BNP |
| Tbil |
Tbil |
| D-Dimer |
D-Dimer |
| Fibrinogen |
Fibrinogen |
| INR |
INR |
| CPK |
CPK |
| CPK - MB |
CPK - MB |
| Troponin |
Troponin |
| Calcium |
Calcium |
| Phosphorus |
Phosphorus |
| CRP |
CRP |
| PRCLT |
PRCLT |
| TSH |
TSH |
| fT3 |
fT3 |
| fT4 |
fT4 |
| B12 |
B12 |
| Iron |
Iron |
| Ferritin |
Ferritin |
| Evaluation |
Evaluation |
Examples of echocardiography data collected during the study
| Echo date |
Echo date |
| LVED diameter |
LVED diameter |
| LVES diameter |
LVES diameter |
| EF |
EF |
| Basal right ventricle diameter |
Basal right ventricle diameter |
| TAPSE |
TAPSE |
| Fractional area change |
Fractional area change |
| Left atrium diameter |
Left atrium diameter |
| Right atrium area |
Right atrium area |
| AR |
AR |
| MR |
MR |
| MR Aetiology |
MR Aetiology |
| TR |
TR |
| AS |
AS |
| MS |
MS |
| TS |
TS |
| RVSP |
RVSP |
| Interventricular Septum Thickness |
Interventricular Septum Thickness |
| Left ventricular Posterior wall thickness |
Left ventricular Posterior wall thickness |
| Aortic Root diameter |
Aortic Root diameter |
| Inferior Vena Cava (IVC) |
Inferior Vena Cava (IVC) |
| Cardiac index |
Cardiac index |
Examples of six minute walk test data collected during the study
| 6MWT |
6MWT |
| BORG |
BORG |
| Capillary oxygen saturation at beginning |
Capillary oxygen saturation at beginning |
| Capillary oxygen saturation at the end |
Capillary oxygen saturation at the end |
Examples of ventricular assist device data collected during the study
| VAD flow - Measurement |
VAD flow - Measurement |
| VAD speed - Measurement |
VAD speed - Measurement |
| VAD PI - Measurement |
VAD PI - Measurement |
| VAD power - Measurement |
VAD power - Measurement |
| VAD alarm - Measurement |
VAD alarm - Measurement |
Examples of cardiopulmonary data collected during the study
| CPET |
CPET |
| O2 max |
O2 max |
| E to CO2 slope |
E to CO2 slope |
| METS |
METS |
| RER |
RER |
Example of symptoms questionnaire answered by patients through the mobile app
| Questionnaire Response Symptoms |
Questionnaire Response Symptoms |
Examples of questionnaire responses
| Questionnaire Response MoCA |
Questionnaire Response MoCA |
| Questionnaire Response MNA |
Questionnaire Response MNA |
| Questionnaire Response KCCQ |
Questionnaire Response KCCQ |
| Questionnaire Response PHQ-9 |
Questionnaire Response PHQ-9 |
| Questionnaire Response CBQ-HF |
Questionnaire Response CBQ-HF |
| Questionnaire Response HF-CQ-5 |
Questionnaire Response HF-CQ-5 |
Custom resource profiles used for RETENTION project
| Patient Retention |
Patient profile for Retention project |
Custom extension definitions incorporated into RETENTION Patient profile
| Patient Sex |
Patient Sex for Retention project |
| Patient Ethnicity |
Patient Ethnicity for Retention project |
| Patient Country of residence |
Patient Country of residence for Retention project |
| Patient Marital Status |
Patient Marital Status for Retention project |
| Patient Height |
Patient Height for Retention project |
| Patient ABO blood group |
Patient ABO blood group for Retention project |
| Patient Highest level of education |
Patient Highest level of education for Retention project |
| Patient Employment status |
Patient Employment status for Retention project |
Definition of all questionnaires used throughout the study
| Questionnaire Symptoms |
Questionnaire Symptoms |
| Questionnaire MoCA |
Questionnaire MoCA |
| Questionnaire MNA |
Questionnaire MNA |
| Questionnaire KCCQ |
Questionnaire KCCQ |
| Questionnaire PHQ-9 |
Questionnaire PHQ-9 |
| Questionnaire CBQHF |
Questionnaire CBQ-HF |
| Questionnaire HFCQ5 |
Questionnaire HF-CQ-5 |