Updates on PFS Network planned studies

Hello all,

Thank you to all those who have applied to participate in upcoming research at The Institute for Human Genetics and those who have expressed interest to participate in a possible genetics study.

Kiel study

We currently have over 40 volunteers for our first study in Kiel. While this is positive, we would still like to have a wider patient pool to select the most appropriate samples from, to ensure research is most effective.

Importantly, some patients have asked about where the sample will be taken from and whether it will leave any scarring.

The sample will be 5mm of scrotal skin, taken from just below the base of the penis. It will not cause any structural damage whatsoever. If this has been holding you back from applying, we encourage you to get in touch.

Expressions for genetics study

We currently have close to 60 expressions of interest for a proposed genetics study. As communicated last week, such a study would require a significant sample size to go ahead. Our first step is to assess how much interest there is in this study, before we can move forward to planning.

Thank you to all who have applied already. If you have sent us an email, we can assure you it has been received.

Please email us if you are interested in participating in this study. It is a blood sample which can be taken locally and is very inexpensive. You do not need to travel or meet any special criteria.

Our email is contact@pfsnetwork.org, or you can apply at pfsnetwork.org/donate.

Thank you all for your support.


The WGS study has geography restrictions?
US people can apply?

Just to clarify, at this stage, the proposed study is just being broadly referred to as a genetics study. We do not know if it will be a WGS or not.

Anyone can apply from any part of the world, so long as they have a local clinic where they could have a blood sample taken.


This is the moment, where each and every one needs to step up. The staff and the more active users here can compensate for a lot by making an extra effort, but for studies we can only provide one sample each like everyone else. Hence, we need everyone from the staff, the most active users to the occasional users and lurkers to step up and participate.

For the genetics study the raw numbers are critical for statistical power. And it is easy to participate. All it takes is providing a blood sample. For the other study, it is important to have a larger group of candidates to select those whose samples we suspect may provide the strongest response during the study.

If you have not seen the study announcements yet or have been on the fence with regard to participation, please consider participating and contact us at contact@pfsnetwork.org.

If you have any questions, please let us know! We want to make this as smooth as possible for everyone involved.

Thank you!