June 2025

The APPAP June meeting was well attended with 10 out of 15 members participating. There were three main topics under discussion.

Reconsenting campaign

ALSPAC collects health and government data from participants using a secure, approved system. Most participants have agreed to this, and those who haven't are reminded regularly. The study is refreshing consent through a reconsenting campaign.

Data is kept safe and anonymised. People can opt out and have their information deleted. The team also checks whether it’s okay to use data from participants who’ve passed away and from children once they become adults. APPAP supported these plans.

G0 Remote Cognitive Data Collection

The researcher leading this study shared plans for a new study tracking how memory and thinking change with age in ALSPAC’s original parents (G0), now mostly in their late 60s. Around 6,500 people will be asked to take an online test once a year for eight years, covering memory, attention, and reaction time. Each session takes about 50 minutes.

There were helpful suggestions about improving clarity in participant documents, ensuring the test works on all devices, and considering incentives—especially since long tests without incentives could reduce the response rate. The test won’t give personal feedback (we do not do this in ALSPAC), as it’s designed to spot trends over time rather than diagnose individuals. Participants will be advised to see their GP if concerned. Overall, the advisory group supported the project, with ideas to keep participants engaged long-term.

Brain Donation Proposal – ALSPAC and SWDBB

ALSPAC is exploring whether to provide original parent participants (G0) the option to donate their brains after death for dementia research. This would be done in partnership with the South West Dementia Brain Bank (SWDBB), which has decades of experience in this area. Participants would get an invitation and contact SWDBB directly if interested. The process is voluntary, with extra consent steps to protect privacy. APPAP stressed the importance of clear information for both participants and families — since families often play a key role after death — and noted that donating a brain can bring comfort and a lasting legacy. The success rate for brain donation is high, with valuable feedback often shared with families. Currently, only adults over 55 without neurological conditions can sign up. APPAP was very supportive of the proposal but agreed that participants need thorough support and information to make an informed choice.

The agenda for the APPAP training day in July 2025 was discussed and agreed. The day will include updates on current research and future plans from the senior study team and researchers. There will also be a visit to the clinic and labs, and an interactive session led by an independent facilitator to reflect on how APPAP is working and explore ways it could be improved moving forward.

The next meeting is in August.