3.1 - Patient Identification

A patientId may be provided when registering a new patient. Upon registration, a wmdaId will be assigned and returned. The wmdaId itself is guaranteed to be globally unique, though it cannot guarantee that the patient is not identified with another wmdaId. The wmdaId must be used to identify the patient in all calls to the Search, Match & Connect (SMC) service after the initial patient registration.

Patient Identifiers

Identifier

Description

patientId

Provided by the local registry system.
Should be worldwide unique.
- Should follow the construct of hub code + local patient id.
  - The hub code should be the two-character ISO country code of the registry (e.g. DE for Germany)
    - In the case of multiple registries in one country, a replacement code will be assigned.
Should be provided as a user-friendly (displayable) id for use on screens and on documentation.

TODO: Discuss whether patientId should be made required within createPatientRequest and updatePatientRequest

Risk of nullable is that duplicate patients may be created. Some transplant centers or patient registries may have concerns with sharing a patientId before the point of donor request. If we make patientId required then we should also consider enforcing uniqueness. Decision on nullability deferred to the business requirements group.

wmdaId

Generated by the central (SMC) system.
Must be unique.
Must be used for all system-to-system patient identification after the initial patient registration.
Should be displayed on screens and on documentation.

3.2 - Create Patient (Send Patient)

The CreatePatientRequest is used to submit a patient to the Search & Match Service. This call returns a wmdaId for the patient.

CreatePatientRequest (/api/v2/patients)

Patient Identification	patientId	string nullable: true
Patient HLA	hla	HLA
Patient Diagnosis	diagnosis	DiagnosisRequest
Patient Disease Phase	diseasePhase	string nullable: true
Patient IDMs	idm	IdmRequest
Patient Date of Birth	dateOfBirth	string($date-time) nullable: true
Patient Ethnicity	ethnicity	string nullable: true
Patient's Country Code	poolCountryCode	string nullable: true
Patient Transplant Centre	transplantCentreId	string nullable: true
Patient Blood Group	abo	string nullable: true
Patient Rhesus	rhesus	string nullable: true
Patient Weight	weight	integer($int32) nullable: true
Patient Sex	sex	string nullable: true
Consent	legalTerms	boolean (If you keep the legalTerms value at "false" or don't send it when creating a new patient, you have indicated you will not comply with legal terms and therefore are not allowed to store a pId. In that case the pId is set to the same value as the wmdaId. This behaviour mirrors the behaviour in the web GUI of WMDA Search & Match. If you click on the "No, I don't have consent" button you are also not allowed to store a patient ID or comment.)

Expected response:

WMDA Patient Identification

wmdaId

string

3.3 - Update Patient

The UpdatePatientRequest is used to update a patient with the Search & Match Service.

UpdatePatientRequest

Patient Identification	patientId	string
WMDA Patient Identification	wmdaId	string
Patient HLA	hla	HLA
Patient Diagnosis	diagnosis	DiagnosisRequest
Patient Disease Phase	diseasePhase	string nullable: true
Patient IDMs	idm	IdmRequest
Patient Date of Birth	dateOfBirth	string($date-time) nullable: true
Patient Ethnicity	ethnicity	string nullable: true
Patient's Country Code	poolCountryCode	string nullable: true
Patient Transplant Centre	transplantCentreId	string nullable: true
Patient Blood Group	abo	string nullable: true
Patient Rhesus	rhesus	string nullable: true
Patient Weight	weight	integer($int32) nullable: true
Patient Sex	sex	string nullable: true
Consent	legalTerms	boolean (If you keep the legalTerms value at "false" or don't send it when creating a new patient, you have indicated you will not comply with legal terms and therefore are not allowed to store a pId. In that case the pId is set to the same value as the wmdaId. This behaviour mirrors the behaviour in the web GUI of WMDA Search & Match. If you click on the "No, I don't have consent" button you are also not allowed to store a patient ID or comment.)

3.4 - Register Patient.

The registerPatientRequest is used to register a patient with a partner registry. This message accompanies all requests.

RegisterPatientRequest

Sending Registry	regSend	string
Receiving Registry	regReceive	string
Patient Identification	patientId	string
WMDA Patient Identification	wmdaId	string
Patient HLA	hla	HLA
Patient Diagnosis	diagnosis	DiagnosisRequest
Patient Disease Phase	diseasePhase	string nullable: true
Patient IDMs	idm	IdmRequest
Patient Date of Birth	dateOfBirth	string($date-time) nullable: true
Patient Ethnicity	ethnicity	string nullable: true
Patient's Country Code	poolCountryCode	string nullable: true
Patient Transplant Centre	transplantCentreId	string nullable: true
Patient Blood Group	abo	string nullable: true
Patient Rhesus	rhesus	string nullable: true
Patient Weight	weight	integer($int32) nullable: true
Patient Sex	sex	string nullable: true
Consent	legalTerms	boolean (If you keep the legalTerms value at "false" or don't send it when creating a new patient, you have indicated you will not comply with legal terms and therefore are not allowed to store a pId. In that case the pId is set to the same value as the wmdaId. This behaviour mirrors the behaviour in the web GUI of WMDA Search & Match. If you click on the "No, I don't have consent" button you are also not allowed to store a patient ID or comment.)

3.5 - Update Registered Patient

The updateRegisteredPatientRequest is used to update a registered patient with a partner registry.

TODO: Discuss whether we need this message. Does the requesting registry take responsibility for sending updates to the partners it wants OR does SMC take responsibility for updating patients with all registries with which the patient has been shared?

UpdateRegisteredPatientRequest

Sending Registry	regSend	string
Receiving Registry	regReceive	string
Patient Identification	patientId	string
WMDA Patient Identification	wmdaId	string
Patient HLA	hla	HLA
Patient Diagnosis	diagnosis	DiagnosisRequest
Patient Disease Phase	diseasePhase	string nullable: true
Patient IDMs	idm	IdmRequest
Patient Date of Birth	dateOfBirth	string($date-time) nullable: true
Patient Ethnicity	ethnicity	string nullable: true
Patient's Country Code	poolCountryCode	string nullable: true
Patient Transplant Centre	transplantCentreId	string nullable: true
Patient Blood Group	abo	string nullable: true
Patient Rhesus	rhesus	string nullable: true
Patient Weight	weight	integer($int32) nullable: true
Patient Sex	sex	string nullable: true
Consent	legalTerms

Page tree

3 - Patient Administration