Hello all,
After consultation with researchers and clinicians who will be leading upcoming research at The Institute for Human Genetics, University Medical Center Schleswig-Holstein in Kiel, we are putting a call out for study participants.
Since our application to use samples previously collected by Baylor was rejected, we’ve spent the past few months figuring out the best way forward. This process is complex and time consuming and we thank the community for their patience. While our plans are not confirmed, we have a commitment from a German clinician to assist with collecting new samples, pending approval of an ethics proposal for his involvement. He is an accomplished urologist who frequently sees PFS patients in his practice, is familiar with the clinical picture and eager to help. We are very pleased he will be involved.
I must stress however that nothing is confirmed until our ethics proposal has been approved. We are putting the finishing touches on our proposal and it will likely be submitted in the coming weeks.
With that said, we are ready to start recruiting patients to participate. If you would like to participate, please read the following carefully.
Criteria for participation
We will be prioritising samples which are most likely to deliver meaningful insights, and those located in Europe or the UK. The key criteria for consideration are:
- Age. Researchers have asked us to prioritise younger patients, ideally 36 or younger.
- Extent and severity of symptoms. Researchers have asked us to prioritise patients who demonstrate multi-systemic symptoms which are severe in nature and have endured since onset of PFS.
- Duration of use. Researchers have asked us to prioritise patients who took the drug for a short period of time.
- Used finasteride or dutasteride. As these are the most powerful class of anti-androgens, we will prioritise fin/dut users.
If you don’t meet every criteria perfectly, please still apply. While this is the ideal criteria, we may make exceptions if certain criteria are met. For example, you may have taken the drug 2 years but have dozens of severe symptoms and are in your mid-20s.
We will be prioritising patients in the UK/EU because of their proximity to Hamburg, where samples will be collected.
If you would like to be considered, please send us an email to contact@pfsnetwork.org (NOT A PM) outlining the following:
- Your age
- How long you took the drug for
- A list of your current symptoms, the severity of each and whether these symptoms have endured since onset
- Your location
- Your ability to cover travel costs (can you cover cost of transport, accommodation and meals in full, partly, or not at all)
Please keep your list of symptoms brief and avoid explanations of each symptom. List each symptom in bullet point form along with severity and whether it has endured.
The procedures
The procedure is non-invasive. We will be taking a 0.25cm x 0.25cm piece of penile tissue. It doesn’t matter if you are circumcised. We may also take a blood sample for future research. The procedure will only take 1-2 hours including the completion of a clinical survey, so you will only need to stay max 1 night in Hamburg. There is comfortable, cheap apartment accommodation 1 block from the hospital, recommended by the doctor involved, which costs €85 per night. The doctor involved has indicated we will most likely be able to book a block of procedures of a 1-2 week period, and several procedures will take place each day.
You will need to complete a phone consultation before your procedure, which will take 30 mins to an hour. You will then provide consent via email.
Dates
Dates are TBD pending approval of ethics proposal, however we are looking at late September or early October. Please indicate in your application if you will be available to travel during this period.
If you are interested in participating, please send us an email to contact@pfsnetwork.org. Again, please do not send a PM. We will then be working to finalise the most suitable patients.
Thank you all for your continued support & bravery.