Application 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 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. 

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 herefor 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. 

Delivery

The data file is delivered to you on a secure server. The file contains the following rubrics: year of the research, type of research, date research, sex, age, conclusions and diagnosis rules. 

additionally you are send an email with two attachments. in the first attachment is te=he information about the searchcriteria, the rubrics and the amount of excerpts that fit the createria. in the other attachment shows the terms of delivery of PALGA.