What is the goal of ARPKD registry ARegPKD?
The ARPKD registry ARegPKD aims to collect data on the clinical courses of ARPKD patients. We believe that we have to learn as much as we can about ARPKD to be able to improve treatment.
In ARegPKD medical staff of major Pediatric Nephrology centers mainly in Europe will enter pseudonomyzed patient data. A detailed "basic data" form and "initial visit" questionnaire will be followed by yearly "follow-up visits".
ARegPKD inclusion and exclusion criteria
The key inclusion criteria for ARegPKD are:
- ARPKD of any age as diagnosed by histology, molecular assessment or clinical evaluation according to Zerres et al. (1996, Acta Paediatr. 85: 437-455)
- informed consent of patient and/or resp. legal representatives
The key exclusion criteria are:
- Genetic proof of another cystic kidney disorder
- Histological proof of another cystic kidney disorder
How to use the ARegPKD webpage
If you would like to include your patient's data in ARegPKD, please register (https://www.aregpkd.org/index.php?id=registration). We will send you a username and password as soon as possible.
Once you have registered please make sure that a positive votum of the corresponding ethics committee has been obtained and that your patient has received, understood and signed the patient information and informed consent form.
Within the password-restricted area you will be able to create new patients for your center. Please make sure that you have the informed consent of your patient at hand. You will have to indicate the date of informed consent.
You will always be able to review the data of all patients from your own center, but you will not have access to data from other centers.
Once you have created a novel patient, please fill in the “basic data” form first. After filling in the mandatory data fields (“basic information”, “initial diagnosis”), the system will create a unique patient-id for your patient. Please always use this pseudonym in any context of ARegPKD (e.g. for labeling of biosamples). You will only have to fill in the “basic data” form once.
Please fill in the “initial visit” form, once you have completed the "basic data" form. The "initial visit" form deals with the clinical presentation at an indicated date. It is intended to follow every patient with at least one yearly follow-up visit. ARegPKD will calculate the time to the next scheduled visit and will indicate it in the “patients registry” for your center. You can however add a follow-up visit at any time.
Please provide us with as much and as detailed information as possible. The more we can learn about this disease, the better.