GENFI | FTD & Me

The Genetic Frontotemporal Dementia Initiative (GENFI) is an international research collaboration focused on familial frontotemporal dementia (FTD) and related genetic mutations in C9ORF72, GRN, and MAPT. By participating, I join over 1,500 individuals worldwide helping to discover early biomarkers and develop potential treatments for FTD. Coordinated by Professor Jonathan Rohrer at University College London, GENFI unites leading research centres across Europe and Canada.

For me, joining the GENFI study has been transformative. When I initially had to face my own genetic condition, I lacked substantial knowledge about what this meant for me personally. However, through my participation, what was once a frightening unknown has now become an area of empowerment and education. I'm sharing details of the GENFI study to ensure others facing similar circumstances can access the same resources and support.

All you need to know

The information provided on this page reflects my personal experiences and perspectives as a participant. It has been written solely by me and does not represent the views or opinions of GENFI. Aren't I professional including a disclaimer? I've shocked myself.

Who can participate

Participation is open to individuals worldwide, particularly those with one of the genetic forms of FTD and their first-degree relatives. Additionally, control subjects without FTD family history are needed for comparison, so anyone can get involved!

Your genetic status

Knowing your genetic status is not a requirement for participation. The study includes genetic testing, but participants are not informed of their results. Separate genetic testing outside the study is necessary for individuals seeking to know their genetic status.

What to expect

In the UK, the annual research day takes place at the UCL Dementia Research Centre in London. It spans from approximately 9am to 5pm and involves various assessments throughout the day. Don't worry, there are regular breaks!

The types of medical tests

Medical tests may include simple procedures like blood and urine samples, along with an MRI brain scan, and a lumbar puncture. All tests are conducted in a very safe and comfortable environment.

The types of cognitive tests

Cognitive tests may involve memory and psychology assessments, which can be both face-to-face and digital. I personally find these quite fun, although I know they're not for everyone! Am I weird?

Opting in/out

Participation in all assessments is entirely voluntary, and participants can opt in/out as they wish. Obviously, greater involvement delivers better research, but there is never any obligation and comfort is prioritised.

The cost

All costs related to the visit are covered from the research budget, including hotel and transportation. I really love that GENFI have removed financial barriers, ensuring everyone can participate.

How to enrol

If you're interested in becoming a participant or would like further information, email genfi@ucl.ac.uk. If you're still in research mode, visit the GENFI or FTD Talk website for additional resources.

The benefits

I've gained knowledge, purpose and empowerment. Assisting researchers in such a vital cause also keeps me informed about upcoming drug trials, which may one day save my life. Why wouldn't I want to be involved?

All you need to know

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