2023 updates from PFS Network
As the first half of 2023 draws to a close, we’re pleased to bring you some updates about our progress toward better understanding and awareness of Post-Finasteride Syndrome.
Research
2023 has brought with it steady progress into understanding of Post-Finasteride Syndrome. Earlier this year, a patient cohort participating in research led by Dr Nadine Hornig at the University of Kiel had their sample collected. In early June, sample collection was completed and all samples have begun cell culturing in the lab. Dr Hornig’s group has now begun collecting control samples for this important project, which is investigating possible epigenetic mechanisms involved in Post-Finasteride Syndrome.
Excitingly, PFS Network announced another project in early May, which will investigate possible genetic factors involved in the disease. This study, led by Dr Alfonso Urbanucci in collaboration with Professor Johanna Schleutker at The University of Tampere, will use whole genome sequencing to look for possible genetic risk factors shared by PFS patients.
Awareness
In 2022, PFS Network released over a dozen stories and interviews with PFS patients on our YouTube channel. We’re very pleased and grateful to have had another four patients come forward this year.
Brave patient shared accounts of how Post-Finasteride Syndrome has devastated their lives. These stories are enormously important as we move this issue out of the shadows, capturing the multi-systemic nature of symptoms involved in PFS, as well as their often-staggering severity.
Regulatory engagement
Thanks to some outstanding work from volunteers involved with PFS Network, 2023 has seen some promising engagement with regulatory bodies in both the US and UK.
Earlier this year, PFS Network was invited to a Patient Listening Session with the FDA, where president Mitch Sabine shared an overview of the disease and five patients shared their personal stories with the regulator. Denise Turner, mother of now-deceased patient Marc, also told Marc’s story on his behalf. PFS Network was also able to share data collected during the largest-ever survey of PFS patients, including key insights such as:
The number of official health diagnoses received by PFS patients increased by 89% after the onset of Post-Finasteride Syndrome
64% of patients experienced at least one symptom in every symptomatic domain: Physical, neurological and sexual
51% of patients surveyed took the drug for less than 200 days, demonstrating no correlation between duration of use and severity of symptoms
72% were extremely dissatisfied with healthcare received after the onset of PFS
We were grateful to the FDA for their time in discussing this important issue, and hope it leads to more ongoing regular engagement.
What’s next in 2023
With over three quarters of our fundraising target for 2023 reached, PFS Network is pleased with progress made. With ethics applications now submitted for our study in Tampere, we will focus on finalising patient recruitment and ramping up fundraising to finish the year strong.
In the coming months, our team will also begin publishing a series of articles using data collected in the largest survey of PFS patients.
If you have any questions about ongoing activities or would like to get involved, we encourage you to reach out.