Kaj je register?
ERKReg je prvi in največji evropski register za vse redke bolezni ledvic.
ERKReg zbira podatke od vseh bolnikov z redkimi ledvičnimi boleznimi v omrežju, ki se strinjajo, da so njihovi anonimni podatki zabeleženi.
Register pomaga zdravnikom, razis- kovalcem in farmacevtski industriji, da pridobijo več znanja o redkih ledvičnih boleznih in se osredotočijo na svoje raziskave ter razvoj zdravil za izboljšanje kakovosti življenja naših pacientov. Namen registra je tudi pomagati organizacijam bolnikov, zdravstvenim organom in oblikovalcem politik pri optimizaciji podpore bolnikom z redkimi ledvičnimi motnjami.
ERKReg trenutno prejema podatke o bolnikih iz več kot 70 bolnišnic v 24 državah.
Cilji registra
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Demografski podatki
Register ERKReg zbira podatke iz 24 držav in omogoča analizo pogostosti in značilnosti več kot 300 redkih bolezni ledvic v različnih regijah Evrope.
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Zgodovina naravnih bolezni
Zdravniške ekipe, ki spremljajo klinični potek, enkrat letno zbirajo podatke o bolnikih. To pomaga identificirati dejavnike tveganja za zaplete in napredovanje bolezni.
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Nove terapije
Podatki registra ERKReg omogočajo multicentrične raziskovalne projekte za raziskovanje novih strategij zdravljenja in novih zdravil, ki lahko izboljšajo bolnikovo počutje in kakovost življenja.
Register omogoča iskanje bolnikov z določeno boleznijo, za katero se razvija novo zdravljenje. Ekipa registra posreduje ujemanje bolnikov s prihajajočimi možnostmi kliničnih preskušanj.
Tako register podpira hiter dostop naših bolnikov do novih terapij.
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Primerjalna analiza
Strokovni centri, ki sodelujejo v registru ERKReg, nenehno spremljajo uspešnost svojega vodenja bolnikov glede na ključne kazalnike kakovosti diagnostičnih in terapevtskih posegov.
ERKReg ponuja statistiko uspešnosti za vsako središče in celoten register. To centrom omogoča, da primerjajo kakovost svojega upravljanja s kakovostjo celotne skupnosti registra ERKNet.
Na ta način podpiramo odličnost in nenehno izboljševanje oskrbe v vseh centrih ERKNet po Evropi.
Oglejte si naš register
Kateri podatki se zbirajo v registru ERKReg?
General information | |
Registration identification number | Number = pseudonym |
Gender | |
Date of birth | Month + year (no day) |
Ethnicity | For example: Caucasian/ Asian / African, etc |
General information regarding the kidney disease | |
Date of first symptoms | Day / Month / Year |
Kidney function on that first day | Laboratory results: serum creatinine |
Other persons within the family with a kidney disease? | Yes / No |
Clinical diagnosis | A number from orphanet will be registered (orphanet is a database of all possible diagnoses) Website orphanet: https://orpha.net/.. |
Specific information regarding the kidney disease (kidney tissue and/or skin tissue) | |
Has a kidney biopsy been performed? | Yes / No |
If yes: | Date + diagnosis (conclusion of kidney biopsy report) Immunohistochemical results (this is a specific staining of the biopsy) |
Has a skin biopsy been performed? | Yes / No |
If yes: | Date + diagnosis (conclusion of kidney biopsy report) Immunohistochemical results (this is a specific staining of the biopsy) |
Specific information regarding the kidney disease (imaging) | |
Has imaging been performed? | Yes / No |
If yes: | Type of imaging (ultrasound/ MRI/ X-ray) |
Specific information regarding the kidney disease (genetics) | |
If the orphacode (see above) concerns a disease which can be inherited, ERKreg will ask if genetic analysis has been performed. | |
Has a genetic test been performed? | Yes / No |
Date of genetic testing | Day / Month / Year |
Type of genetic test | Sanger / gene panel / WES/ WGS (this concerns the technical test which has been performed) |
Date of test result | Day / Month / Year |
Is the test result confirming the clinical diagnosis? | Yes / No |
If yes: Which gene and which variant has been found? | Gene and variant |
Specific information regarding the clinical course of the kidney disease (renal replacement therapy) | |
Has there been a need for renal replacement therapy? | Yes / No |
If yes: Date of start of renal replacement therapy | Day / Month / Year |
Type of renal replacement therapy | Haemodialysis / peritoneal dialysis / kidney transplantation |
If there has been a change in type of renal replacement therapy, it can be registered in ERKreg as well. In that case again the date and type of renal replacement therapy will be registered. Furthermore, the reason of the change will be registered (failure of current therapy or wish of patient/family). |
Specific information regarding the clinical follow up (yearly update) | |
A yearly update about clinical course will take place. Data that will be collected are the following: | |
Data regarding physical examination:
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Laboratory measurements:
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At closure of ERKreg participation | |
When a patient is no longer followed up in the ERKreg registry, a follow-up termination date will be added. Also, the reason of termination of registering data of this particular patient shall be added. Reasons can include: patient withdrawn, patient deceased, or patient cannot be reached due to relocation. |
Disease specific information (it will be dependent on type of kidney disease which additional data can be collected) | |
Data regarding physical examination: | For example:
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Laboratory measurements: | Extensive laboratory measurements, for example:
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“Events” | For example:
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Data regarding treatment | For example:
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Data regarding the results of treatment | This will be data as described above |