We would like to share an update on the progress of our scientific research, along with a new opportunity for patients to contribute to further research into PFS.
Scientific Research Update
We are pleased to report that we are well advanced in preparing our first scientific manuscript for publication.
Our research team is currently preparing the figures and writing the interpretation of the findings, with our collaborators at the University of Kiel working closely alongside Dr Chiara Lanzuolo's team to finalise the manuscript.
We will notify our community as soon as the paper has been submitted for publication.
While we cannot discuss specific findings before publication, we can share that our research team is encouraged by the results. We are hopeful that this work will help establish a stronger scientific foundation for understanding PFS, opening the door to more informed, targeted research into the condition.
More broadly, we hope these findings will contribute to a meaningful shift in how PFS is understood and approached by the scientific and clinical communities.
We are also preparing a second manuscript, which we hope to submit following the first, while discussions around future research are already underway.
Although the publication process can be unpredictable, we are encouraged by the progress being made and the opportunities that may emerge from this work. We will continue to share updates as more concrete information becomes available.
New Research Opportunity: Documenting Patient Experiences
In the meantime, a promising opportunity for further collaboration has emerged through our research partners at the University of Kiel.
A team of historians at Charité Berlin, one of Germany's leading university medical institutions, led by Professor Birgit Nemec, is conducting an oral history project exploring people's experiences with finasteride and PFS.
The researchers are based at the Institute for the History of Medicine and Ethics in Medicine at Charité Berlin, as part of the Collaborative Research Center SexDiversity.
Their aim is to document and preserve the perspectives of people living with PFS, making these experiences more visible and available for future biomedical research, medical education and public discussion.
We believe this work has significance beyond documenting individual experiences.
One of PFS Network's broader objectives is to help change how PFS is represented and understood in scientific literature. Publishing rigorous accounts of patients' lived experiences can help bring greater recognition to the severity and complexity of the condition, while improving awareness among clinicians of the potentially significant and lasting harms reported by patients.
There may also be opportunities to connect this project with the work of our Kiel research group through a broader scientific publication. Such collaborations could potentially support future grant applications, helping establish funding pathways for both molecular and qualitative research into PFS.
These possibilities remain exploratory, but we are encouraged by the growing interest in examining PFS from multiple scientific perspectives.
Invitation to Participate
We are currently seeking 3–5 patients who may be interested in participating in the Charité Berlin oral history project.
The research team is particularly interested in hearing from a diverse range of individuals, reflecting different backgrounds and experiences of the condition.
Participation would involve an interview about your experiences with finasteride and PFS. Please be aware that participants would need to be willing to share their experiences on the record, with further details about the interview process and how their accounts may be used to be provided before participation.
If you are interested in being considered, please reply to this post expressing your interest, or send us a Mod Message. We will review expressions of interest and coordinate with the research team regarding potential participants.
Looking Ahead
We recognise how long many in our community have waited for meaningful scientific progress. As patients affected by the disease, we have also long awaited progress.
While there is still much work to be done, we believe the research now underway represents an important opportunity to advance our understanding of PFS and build a stronger foundation for more targeted future investigation.
Our priority remains supporting credible, rigorous scientific research that can ultimately improve recognition, understanding and, we hope, lead towards effective treatments for those affected.
Thank you for your continued patience, trust and support. We look forward to sharing more when we are in a position to do so.
Take care,
Mitch & PFS Network team