How many participants are needed? 

Minimum of 10 participants, but would like as many as possible! 

How will data be shared with PAGs? 

Data can be shared with any PAG as data is apart of the cross-disorder study 

What is the timeline for this study? 

This will be an ongoing study that is on track to start in Q2/Q3 (April-Sept.) of 2026 

Can people based outside the U.S. take part in the study? 

Yes! However, the survey and interviews will be conducted in English 

Can PAGs donate now, and do a sub-study later? 

Yes! 

Are we planning on asking about PAG engagement after loss? 

We will explore ways to include this in future surveys and partner with groups to connect caregivers with grief support and help them re-engage with their communities 

How can data be aligned for ongoing and future mortality studies? 

Our survey types allow for data alignment across rare neurogenetic disorders and we will work with the PAGs to align data to alleviate the pressure on the caregivers 

What is needed for participation? 

We ask that you bring medical records and the death certificate, if possible

Tissue donation is not required, but we may collect information about where that is stored - Can store in BioBank if you’d prefer