PFS Network hosts group’s first research conference into Post-Finasteride Syndrome

Earlier this month, PFS Network organised our group’s inaugural research conference, bringing together a multi-disciplinary group of researchers and clinicians on the issue of Post-Finasteride Syndrome.

We were thrilled to be joined by an excellent group of 11 molecular biologists, geneticists, urologists and endocrinologists across two days at The University of Tampere, Finland. Researchers in this group have been published in some of the world’s biggest scientific journals, including Nature and Cell.

Discussion

Over two days, our group, alongside scientists involved in PFS research including Dr Alfonso Urbanucci and Dr Nadine Hornig, discussed a number of topics related to the patient experience:

• Current understanding of the disease and previous findings

• The patient experience, informed by an analysis of a patient survey conducted by PFS Network (n=427)

• Our organisation’s history and the patient community

• How the patient experience may be improved clinically

We also discussed a number of topics related to current and future research projects:

• Researcher’s previous work, and how the scientific concepts involved possibly overlap with Post-Finasteride Syndrome

• Current research sponsored by PFS Network

• How this research may be expanded or optimised in future studies, through a range of methods

• How attendees could otherwise be involved in research sponsored by PFS Network

Key outcomes

We were thrilled to achieve several key outcomes from this meeting, most notably, the formation of a formal scientific advisory panel for PFS Network. This panel will be made up of accomplished molecular biologists, geneticists and clinicians, and help inform all future PFS Network projects. Members of this new board include:

• Dr Alfonso Urbanucci, molecular biologist, University of Tampere

• Dr Nadine Hornig, molecular biologist, University of Kiel

• Professor Johanna Schleutker, geneticist, University of Turku

• Professor Janna Saarela, geneticist, University of Helsinki

• Professor Mohit Khera, urologist, University of Baylor

• Professor Per Thorsby, endocrinolgist, University of Oslo

You can read in detail about the new board here.

Moving forward

This represents our group’s first in-person meeting on the topic of PFS, an important milestone as we continue to advance understanding and awareness of the disease. While we have previously had close contact with some of the researchers who attended, it was pleasing to establish good standing with experts we met for the first time.

This new advisory board will be crucial in ensuring that every project sponsored by PFS Network is appropriately designed to meet the highest standards. Beyond the scope of our first studies, cross-centre collaboration will be crucial, ensuring access to the best teams and technologies. We are thrilled with the involvement of all members.