Submitting requests via the Palga portal as a researcher
Before submitting a data request to Palga, please read the following information carefully.
Requests can be submitted by anyone conducting scientific research in collaboration with a pathologist affiliated with a lab in the Netherlands.
Secondary school students, journalists and patients cannot submit requests.
To submit an application, you must first create an account (https://aanvraag.palga.nl/login).
Your answers on the request form should be succinct and as complete as possible. References to attachments will not be accepted.
Checklist
- Title: the research project has a running title, which can be used alongside the request number to communicate with the researcher.
- Background: the background to the study is described in a clear and concise manner.
- Research question: there is a clear research question.
- Hypothesis: if there is a hypothesis, it is clearly formulated.
- Method: describe what research method you will use (trial, prospective or retrospective cohort, patient control study, etc.), the outcome measures and how you plan to analyse the data. Specify the minimum number of patients required.
- Search criteria: if you already know your search criteria, you can mention these here.
- Period: here you can specify the period for which you want to request data.
- Required data: if you only tick ‘numbers, preliminary query’, you will receive raw, unprocessed data, which cannot be used for publication purposes. This will give you a rough estimate of the numbers in the Palga database.
If you tick ‘data from the national database (excerpts)’, you will receive narrative and/or protocol data (if available) from the Palga database, which must be read multiple times to extract the correct data. An excerpt is a summary from the pathology report that can be obtained from Palga. If you wish to receive a full, anonymised pathology report, please note this under ‘Required data and/or tissue samples’. You can only request a full report after you have received excerpts from Palga.
- Required data and/or tissue samples: if you tick ‘PA tissue sample block (FFPE block)’ and/or ‘PA tissue sample, other’, the fields ‘Send tissue samples abroad’, ‘Germline mutation analysis’ and ‘Laboratory techniques’ should also be completed.
- Link: if you have your own cohort or wish to create a link between Palga’s database and another registry (NKR, PHARMO, etc.), please indicate this under ‘Link’. You can upload a blank consent form to the portal if you have informed consent.
If you only have PA numbers, you must also indicate this under ‘Link’.
- Laboratory techniques: the labs want to stay informed on what happens to the tissue samples they give out so they can ensure that enough tumour tissue remains in the block after you are finished with it. Because the samples that are provided were collected for the purpose of patient care, they should never be used up! Provide a clear description of the laboratory techniques you plan to use, how many sections, cores and/or rolls you will cut, and how thick these will be. You must also indicate whether your research involves germline mutations and whether the techniques will be performed by yourself or a third party (abroad, for instance).
You can also specify here exactly what you want to receive from the lab. If you indicate that you want to receive tumour and normal tissue blocks, HE sections are not included as standard. If you would like to receive these as well, please state this explicitly.
- Receiving lab: indicate here where the samples should be sent. This can be the pathology lab at your hospital, but you can also select another pathology lab.
- Billing address: Palga does not charge for national requests, but labs may charge fees for their services. The amounts charged vary depending on the lab and the type of sample that is requested. Please take these costs into account before submitting your request. The Dutch Pathological Society’s guidelines are available here.
- Attachments: if you want to include attachments, you can upload these here.
- Letter from ethical review committee: many labs require approval from the local ethical review committee for tissue sample requests. This is not the case for most data requests. If your request has been reviewed by the local ethical review committee, you can upload the approval statement to the portal. If approval from an ethical review committee is not required, a non-WMO statement should be attached to the request.
Once the request form has been completed, it can be submitted by clicking the ‘Submit’ button at the bottom.
The status of the request will change to ‘Received by Palga consultant’. If the status changes again, this will also be shown in the portal. Go to the bottom of the page for more information on this. If your request involves an intermediary procedure, please indicate this in the portal when you receive the samples and when you return them so your request can be closed.
The project leader and pathologist involved can view the request using their own accounts, which they can create at https://aanvraag.palga.nl/. They cannot make changes to the request. The pathologist must co-sign the request by printing out the authentication form, signing it and emailing it to aanvraag@palga.nl.