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EUROCYS NEWSLETTER No. 4

Multidisciplinary European multicenter
Registry of patient with Cystinuria

What is EUROCYS?

EUROCYS is a multidisciplinary, European, multicenter and prospective registry of patients with cystinuria.
It includes demographic, clinical, surgical, biological, genetic, radiological and therapeutic data. These data are recorded via the ERKReg registry platform.

Inclusions have been opened since July 2021; all centers can include their patients who have cystinuria.

Objective of EUROCYS

To collect consistent and comparative prospective clinical, biological, genetic and radiological data from patients (children and adults) with cystinuria followed in European centers.

Patients enrolled until 29th February 2024

Since the previous newsletter, more than 100 new patients have been included in the EUROCYS sub-registry(371 patients). Data entry has been performed by 29 different healthcare centers.

Patients enrolled by country

Cystinura patients enrolled by centre

Some data about first patients included

Age at inclusion 32,4 yrs (0 ; 86,8 yrs)
Age at diagnosis 19 yrs (0 ; 78,4 yrs)
eGFR 82.1 ml/min1,73m²

Treatment

N = 260

Adverse events
recorded since inclusion

Potassium citrate

233 (89,6%)

Sodium bicarbonate

51 (19,6%)

Potassium bicarbonate

24 (9,2%)

Tiopronin

71 (27,3%)

3 AE

Hematological
Cutaneous
Proteinuria

D Penicillamine

15 (5,8%)

2 AE

Proteinuria
Gastrointestinal

Small survey on the recommendation made to your patients

EUROCYS Survey on center habits

Please answer a short questionnaire about the habits (especially eating habits) of your center.

Begin

Center name :

Continue

Diet recommendation

For your cystinuria patient, do you usually recommand :

	yes	no
An increased fluid intake
A protein reduction
A reduced methionine intake
A restriction of sodium intake

Continue

An increased fluid intake

If yes, which volume? (ml or ml/kg)

Continue

A protein reduction

If yes, how much? (g/kg/day)

Continue

A restriction of sodium intake

If yes, how much? (g/day)

Continue

Consultation with a dietician

	yes	no
Do all your cystinuria patients have a consultation with a dietician?

Continue

If no, how many cystinuria patients have a consultation with a dietician?

	yes	no
0-25%
26-50%
51-75%
More than 75%

Continue

And, the patients who have a consultation with a dietician are

	yes	no
Newly diagnosed patients
New patients in the clinic
On patients’ request
According to biological values and/or number of stone and/or lack of patient compliance

Continue

Other reasons of patients who have a consultation with a dietician :

Continue

These patients have

	yes	no
A single consultation
A follow-up at 3 months
A follow-up at 6 months
A follow-up at 1 year or more

Continue

Therapeutic Patient Education group

	yes	no
Have you set up Therapeutic Patient Education groups?

Continue

If yes, it concerns:

(several boxes can be ticked)

all patients

children

adolescents

adults

patients with « active » cystinuria

Continue

If no, would you like to set up Therapeutic Patient Education groups in the future ?

yes

Done!

Thank you for participating in our survey!

Your insights are invaluable in advancing our understanding of center habits.

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Using the potential of the ERKReg registry

Many patients with cystinuria are enrolled in the ERKReg registry but still not included in EUROCYS subregistry. The goal is to collect accurate data on the outcome of patients with cystinuria in order to improve knowledge and clinical practice. Investigators will be involved in future publications.

We strongly encourage investigators to also include their patients in the Eurocys sub-registry as most Italian, Belgian and French centers have already done.

This can be done easily in the patient data entry menu. By approving participation in the sub-registry, the extended questionnaire will be displayed.

How to participate in the EUROCYS registy?

ERKNet centers, but also any other interested nephrology or urology sites can enter their patients with cystinuria. Don’t hesitate to mention the EUROCYS registry to your nephrologist or urologist colleagues from other hospitals or clinics. Please forward the contact details below.
Have the ERKReg patient informed consent form signed by the patient and by the nephrologist/urologist in charge.
Provide the patient-specific note of the EUROCYS registry for new patients and for patients already included in ERKreg Registry.