Requesting data and tissue samples via the Palga Request System (portal)

1. 1. The researcher makes a selection of the excerpts for which they want to request tissue samples using the data file provided by Palga. They then send an Excel file containing only the Palga patient number (or registration number in case of a linked dataset), Palga excerpt number and date of receipt of the selected excerpts.
   2. Palga processes this file and finds the labs and report numbers for the selected excerpts.
   3. For each lab, Palga generates a list of report numbers corresponding to the Palga patient numbers (or registration numbers), which it then sends to the labs via the Palga portal.
   4. If a request is approved by a lab, it will collect the requested tissue samples and send them to the researcher along with a ‘packing slip’ from the portal. This will be done by a HUB employee if the lab in question uses HUB’s services. If the researcher has any questions for the labs or the HUB employees, the Palga consultant can provide their email addresses.
   5. If a lab grants a request for pathology reports and/or tissue samples, it can name a pathologist to be included in the DNTP group. The DNTP group is listed collectively on scientific publications and reflects the contributions of pathologists in the Netherlands to research facilitated by Palga and DNTP.

Requests for anonymised pathology reports from the labs (based on a Palga data request) follow the same procedure as described above.

1. Before requesting clinical data from patient records, the researcher should first contact an authorised staff member (e.g. an attending physician) at the hospital the request will be submitted to. Based on the provided dataset, Palga will send the researcher a list of labs to get in touch with.
2. After contacting the authorised staff member, the researcher sends Palga their name and email address.
3. For each lab, Palga generates a list of report numbers corresponding to the Palga patient numbers (or registration numbers) and the names and email addresses of the authorised staff members, which it then sends to the labs via the Palga portal.
4. If the lab approves the request, an employee will look up the hospital numbers corresponding to the Palga patient numbers (or registration numbers).
5. The hospital’s authorised staff member contacts the pathology lab and receives the data.
6. The authorised staff member looks up the requested data and provides it to the researcher. This data is anonymised, and patients are identified only by their Palga patient number (or registration number).

Individual hospitals may choose to deviate from this procedure, but patient privacy must be ensured at all times.

If you, as a researcher, already have PA numbers, please indicate in the portal how you acquired these and what patient-identifying data you have in addition to the PA numbers. If you have access to patient-identifying data, you must first obtain consent from the patients in question before you can request the tissue samples. Please send us the blank informed consent form and patient information leaflet explaining the tissue sample request (through Palga) you used for this.

1. 1. The researcher sends the PA numbers and corresponding labs/hospitals to Palga using this format. 
   2. Palga processes this file and checks that the PA numbers and corresponding labs/hospitals are correct.
   3. For each lab, Palga generates a list of report numbers corresponding to the registration numbers, which it then sends to the labs via the Palga portal.
   4. If a request is approved by a lab, it will collect the requested tissue samples and send them to the researcher along with a ‘packing slip’ from the portal. This will be done by a HUB employee if the lab in question uses HUB’s services.

If clinical data is also requested (from the attending physician), follow the procedure for procedure for requesting clinical data from an attending physician.

HUB employees work in the pathology and/or biobank departments of the seven UMCs. Given the large number of tissue sample requests made by researchers from academic hospitals to non-academic hospitals, the UMCs decided to each make one employee available to help non-academic hospitals look up, register and send the requested tissue samples (via the portal). Not all pathology labs make use of this assistance and instead retrieve the requested tissue samples themselves.