Genetics study: Sample collection to begin

We are very pleased to announce that we have received final approvals for our upcoming genetics study at The University of Tampere. We can now begin collecting samples.

Earlier this year, we put a call out to patients interested in participating. If you volunteered and qualify, you will soon receive an email with instructions on next steps.

Please be patient. Sample collection for this project is complex and will take time. You may not be contacted immediately.

We will prioritise applicants in the following order:

• Applicants who completed our patient survey on propeciahelp will be contacted first

• Suitable applicants with a member story on propeciahelp, or a post history predating study announcement on reddit, will be contacted second

• Other applicants will be contacted last

If you participated in our study at Kiel, you do not need to have your sample collected. We will be extracting DNA from samples already collected at Kiel for use in Tampere.

Patient interviews

Some applicants will be required to complete an interview with our charity in order to be assessed for suitability.

These interviews will take place with our charity’s president or a patient volunteer, and will take roughly 30 minutes. You will be invited to participate if you qualify.

If you are selected for an interview, please do not delay in scheduling one. Our team are making time in their schedules for these interviews. The longer it takes to complete interviews, the longer it will take to complete this study.

Call for more applicants

Despite strong interest in this study, we are still short of our target of 150 participants.

We urgently need community support for this study to be successful.

If you have not yet applied for this study and are able to participate, please apply here. Your participation will truly make a difference.

What’s next

We are enormously grateful to the team of researchers, clinicians and volunteers supporting us.

We have been overwhelmed by the support received in the nearly two years since we announced our first study, and heartened by the progress made.

The research process takes time, but patients can be confident that thanks to your support, and the support of our team of researchers, we are on the right path.

Never has there been more demonstrable progress towards understanding and awareness of this disease and we ask you to continue supporting us as we reach another important milestone.