 Thank you all right, so am I oh, yeah, look at that whoa So I'm gonna just talk through my perspective as the I'm one of the PIs of the Coordinating Center and So I'm just gonna walk through the questions kind of one by one So I think we should catalog and evaluate the existing training across the UDN this has not been a primary focus of ours here to four and Then we can identify what would be best pursued at the network level at a very in-depth conversation Thanks to David Adams bringing me up to speed on the many activities at the UDP and I think those do deserve An intentional assessment And we should identify gaps in the in the current training So our current training is is focused on you know on clinicians primarily on researchers But we may need to educate a broader range of people if we're to disseminate this model which I think many of us represents of the future of medicine for instance hospital administrators and Just an article came out recently About basic science researchers not knowing how to speak to patients and and preparing them to have those interactions Which will certainly increase over time So currently we have the UDP has nine distinct training activities fellowships genome school clinical rounds Several other sites also have training components, and we are planning to create CME CME courses So as I said previously we should review what we're doing and see what works and what doesn't as David Adams pointed out We need to have data sets and materials that can be used for training so that we have we have material to work on to to to educate people and And David also pointed out that we should not underestimate the power of direct outreach like site visits So either people coming in or us going out in order to disseminate what what good the UD UDN brings So this is just a quote from the two mats Matt might is is our patient and family advisor at the coordinating center He's urging us to collaborate and share share everywhere share early share often And so this is something that really does drive us We should certainly continue to share data with DB gap and and we will And as mentioned before we share with phenome central which is based out of out of Toronto and the sick kids hospital and Brings us into matchmaker exchange, and we certainly should continue to do that because that's where we're going to find matching cases second cases third cases Finally something that I think we need to do more of is share more information via the internet and Matt might has been Instrumental in emphasizing the importance of this when I talked to him about where we need to share data You know we went through DB gap phenome central and he said well, how about Wikipedia? That's where a lot of people get their information So I think we should intentionally do this more often So we share data with a variety of sources and we have just started a patient web pages project Where an unsolved case or a case with a rare diagnosis where they're looking to find a community We create a web page to search engine optimization and help them find find their community And Matt might has had great success with that And so we're we're drawing upon his expertise to do that and we have a number of patients who are interested So We need to have expanded curation because we're not just talking about data sharing We want to share high quality data and as Bill mentioned the the cataloging of human phenotype ontology terms and phenotypes is is no small undertaking and it's not typical Clinical care, so that's something I think where we need to Continue to be the vigilant and expand our ability to be vigilant and we should Make sharing with the internet part of our our practice Collaboration all right, so we see the value certainly of partnering with with other Undiagnosed diseases clinics around the country and a lot of that I think has been happening through the UDN International oddly enough where we come together and speak But we should integrate some of that into our into our you know business as usual at the UDN And I don't think we've done that here before So we should proactively build collaborations with extra UDN researchers as Many have mentioned there's a huge network of researchers out there and finding them is tough for patients It's tough for us too, but we need to devote Time and energy to find these to find these researchers to pair them with patients such as the Transition after their UDN visit is fruitful and generates the kind of scientific knowledge that that this network promises to do And there are all these projects across also funded by NIH that that may be relevant to us and Thank you. Thank you John and up until this point. We haven't actively been working together I think you know as a UDN it's fair to say we've been focused on getting up and running And I think now is a time for us to look outward and build bridges such that we can reduce the redundancy and and learn Learn from these other projects and potentially work on cases together So and as I alluded to before the collaborations aren't just Biomedical and as a number of people have said there's the research clinical distinction, which is a sort of an ethical Question implications for payers implications for how you run your clinics and and those kind of collaborations would be would be helpful to have to so We're currently participating in UDN international and we're accepting applications for international collaborative clinical sites You can find the application on our website Our 21s and supplements are being given out to explore gene function. They're sort of impromptu Collaborations focused on specific UDN cases. I know this guy who's good at this I think I'll match his patient up with that person and that's of course expanded with a network and the UDN is being studied by Sociologists based at UCLA. So yes, they they observe our our activities and we'll come back to us someday telling us what we're like so Should we be more international it makes sense to have a forum to share these practices and and most of all I think to encourage data-sharing at a global level and what level of support should they have should collaborations have I think they should have more support than they do now because as in talking to David Adams They do take a lot of effort to maintain these collaborations outside of the UDN and make sure that the information comes back into the UDN And so with that I'll thank the members of the UDN David Adams the people who created this slide template and you for listening