How the PALGA portal made life a lot easier

"Without the PALGA Portal, we would never have managed to trace those 50 rare cases dispersed over more than 20 pathology labs”.

“We study a very rare form of lymphoma. That PALGA was able to track down all cases of Breast Implant Associated Anaplastic Large Cell Lymphoma (BIA-ALCL) since 1990 is unique.” 

Daphne de Jong, Professor of Pathology at VUmc, emphasizes the excellent collaboration she has had with PALGA for many years. Among other things, it resulted in the very large cohort that made her lab’s research into BIA-ALCL possible. It is probably the largest population-based cohort in the world for this very rare disease. We asked Professor de Jong and her colleague Nathalie Hijmering, Coordinator of the HOVON Pathology Facility, how the PALGA portal has changed their work over the years.  

Daphne de Jong recalls: “In the past, PALGA simply provided the pathology numbers and corresponding pathology labs where material associated with cases identified in the PALGA database were present in the archives. We had to contact all the relevant labs ourselves, which meant an awful lot of work. In fact, we needed 1 full-time employee just to get that done. As every lab had its own procedures, this resulted in as many individual discussions about informed consent, anonymization, material handling and, of course, costs. On the other hand, labs received requests from many different research groups in the Netherlands, each with their own opinions on these matters and their own procedures. Despite all the time and effort put into obtaining samples, we often only received a fraction of what could have been available. Obviously, this limits the quality of research, especially when studying rare diseases such as breast implant associated lymphomas.” 

Nathalie Hijmering was involved with building the PALGA Portal at the onset. She adds: “In the past we used an Excel spreadsheet to keep track of whether we had received the material. For large studies, this is difficult and very time consuming, especially because different biopsy samples from one patient could be archived in different labs. Sometimes it was difficult to find the most appropriate contact person. Some labs have a biobank unit with a dedicated person who takes care of all biobanking activities, but most do not and then this work needs to be done as an extra. The strength of the PALGA Portal is that it is fully transparent. As a researcher, you know that a request was sent via PALGA to the lab, that the request was been approved by the lab, and that the lab is actually busy processing it. You don’t have to call and check whether they read your mail, which despite being part of the work, always felt like you were hassling people. Nowadays, we get the bulk of the samples within 3 months, and I usually have everything within 6 months. Something I could not have dreamed of before. The labs like the PALGA Portal because of the uniformity of the requests and the fact that all requests follow the same route. Tissue blocks that are sent out for research are easy to trace and locate. Material can be retrieved with one push on the button.” 

PALGA Portal builds trust 

De Jong: “The logistics of the PALGA Portal requests are fully transparent and involve a careful check and approval of all the important aspects, such as scientific quality, informed consent and other ethical issues (METC, non-WMO) and costs. Because both researchers and labs can rely on and trust the PALGA Portal, no additional individual discussions about these issues are required, which is what makes labs agree to cooperate more quickly. Moreover, the PALGA HUB employees that support the request process speed up the process tremendously.  They have a clearly defined role and position and are accepted by the labs for that. In the past, we used to offer our own help, but labs don’t always like to have new people browsing through their archive. The hub employee is a familiar face. They are trusted people and trust is very important. The PALGA Portal builds that confidence between labs into the process.” 

When the PALGA Portal started, Nathalie Hijmering was the first HUB-employee. She points to another aspect of the HUB employees’ role: ‘While a researcher’s priority is with their research, a HUB employee is trained to select the correct material, works according to local procedures, and takes into account the need for sufficient material to remain in the archive for follow-up diagnostics.’ 

Asked whether there are any other services she would like the PALGA Portal to provide, De Jong replies: “The Portal is not designed to support pathology work within clinical trials. If this were possible, it would be of great help. It would imply a somewhat different way of working and procedures. It may be something to develop for the future as labs increasingly ask for this.” 

References

Breast Implants and the Risk of Anaplastic Large-Cell Lymphoma in the Breast 
Mintsje de Boer; Flora E. van Leeuwen; Michael Hauptmann; et al 
JAMA Oncol. 2018;4(3):335-341. 
DOI:10.1001/jamaoncol.2017.4510 

Increased prevalence of BRCA1/2 mutations in women with macro-textured breast implants and anaplastic large cell lymphoma of the breast 
Mintsje De Boer, Michael Hauptmann, Nathalie J. Hijmering, Carel J.M. van Noesel, Hinne A Rakhorst, Hanne EJ Meijers-Heijboer, Jan Paul De Boer, René RWJ van der Hulst, Daphne De Jong, Flora E. van Leeuwen 
Blood. 2020;  
DOI: https://doi.org/10.1182/blood.2019004498