Request procedure

Procedure for national requests

The request procedure starts once you have created an account in the PALGA Request System and have submitted your request. Your request will be considered both by the Scientific Council and the Privacy Committee. Their recommendations will guide the decision by PALGA’s Board on whether or not to make the data available. The Scientific Council evaluates requests in terms of their pathological, scientific, research-based and epidemiological relevance. The Privacy Committee determines whether the request complies with the privacy guidelines. Applicants will be notified if their requests have been approved.

PALGA’s Scientific Council and Privacy Committee checks whether the request procedure meets the requirements and determines whether it can be processed. However, this assessment is not intended to replace assessment by a medical research ethical committee. 

In order to ensure that your request is assessed properly, you can upload the approval from your local medical research ethical committee, if applicable.

Procedure for cohort requests

Requests for cohort requests are also handled by the PALGA Request System. The patient’s permission is required before their data can be linked. To this end, you will need to add the blank informed consent and the patient information to your request. If no informed consent is provided, please append an explanation for this to your request. For further details on linking patient data, please visit Federa’s website, or look here for details of the Code of Conduct for the Use of Data in Health Research.

PALGA's database does not contain identifying patient data, only pseudonyms based on this data. Pseudonymization must be carried out before a link can be created between a cohort and PALGA's database. To this end, we cooperate with ZorgTTP.

Thereafter, the procedure is as follows:

1. ZorgTTP contacts the applicant regarding the mode of delivery (secure delivery) to be used for the cohort data, and the file format. Look here for the manual for delivery of the cohort data.

2. The applicant sends the cohort’s personal details to ZorgTTP. 

3. ZorgTTP encrypts the personal data and sends details of the pseudonyms (including the administration numbers) to PALGA.

4. PALGA links the study cohort’s pseudonyms to the pseudonyms in PALGA's database, and selects the requested pathology results.

5. PALGA delivers the pathology results to the applicant.

PALGA’s Scientific Council and Privacy Committee checks whether the request procedure meets the requirements and determines whether it can be processed. However, this assessment is not intended to replace assessment by a medical research ethical committee. 

Additional requests

If further investigation is required after a national request has been completed, a selection can be made that is of potential interest for further investigation. PALGA gives the researcher the names of the laboratories in which the requested material is stored. PALGA gives the laboratory details of the report numbers that correspond to the material being requested. Investigators should contact the laboratories themselves in order to retrieve the human tissue in question.

If the researcher also wants to receive clinical information from the patient record, they will have to personally approach a specialist at the hospital in question.

The PALGA Request System  

After creating an account, applicants are asked to formulate their wishes as specifically as possible. This is intended as a way of supplying background information on the study, as well as details of the research question, hypothesis and method. Next, the type of request involved can be selected. Throughout the request procedure, applicants can monitor the status of their request through the system.

Delivery 

The data file is sent to you via the PALGA Request System. The file contains the following sections: year of study, type of study, date of examination, gender, age, conclusion, and diagnosis coding lines.
In addition, an email with two attachments is sent. The first attachment contains details of the search criteria, the output sections, and the number of excerpts that meet the search criteria. The other attachment contains PALGA’s terms of delivery. 

Go to the PALGA Request System: https://aanvraag.palga.nl.
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You can also send an email to: aanvraag@palga.nl