final answer or to to get your result and show your result and like you mentioned i think you said your academic quest or something like that for the for the journal articles um so i think it is important to just consider you know the aftermath of what you've what you've done and i wonder if it is important to think about in the beginning when you're sort of applying for your initial approval is that something that's currently done melissa do you have any perspective on that

Yes, I mean that is something that we think about and engage with and in our information that we share with potential participants that we have outlined a clear plan for what it is that we propose to do with the findings.

Yeah, I think that's particularly in the rare disease community, which I engage with as a researcher, there is a potential for individual results that we might obtain through the research process being beneficial to individual participants.

And we have built in the appropriate mechanisms to return those results.

with the help of a genetic counselor who I know you've also spoken with on other episodes.

But potentially for the majority, because rare diseases are so rare, there is a strength in numbers and in trying to collectively study diseases from many different individuals in order to try and uncover answers.

And in that way, the contribution is unlikely to generate any individual level results for the research participant, but may benefit individuals with the same disease that they have in communities, etc.

Yeah.