Eric Green: Well, thank you Anastasia.
Let me actually start by giving a big thanks to Anastasia, who -- and her NIH team of people,
the working group, for their hard work in this program, but also to -- in their most
immediate work of setting up this important planning workshop.
So that's -- it's been very valuable to have a great NIH team at the helm, and they truly
are terrific, and Anastasia's doing a terrific job at this.
I was asked to both welcome all of you, and I do welcome all of you to a Monday morning
in Bethesda.
Or I guess we're technically in Rockville.
But and also to set a context and a little bit of history for the program, which I'm
happy to do because I've been involved at least as a facilitator and a fan of the UDP
UDN really for the better part of eight or more years.
Mostly with the person sitting to my left, Bill Gahl.
I would also tell you that the program has been administratively led by NHGRI almost
from the beginning, and the institute has been delighted to do that and has been heavily
involved in making sure that the intramural component and now the extramural component
run smoothly, because we firmly believe in the mission of this program.
For those of you who may not fully appreciate the history, I don't want to go through too
many details, but I was asked to give a little bit of this to set a context.
It didn't always exist; it didn't always exist as a common fund project.
It really came to be around 2008 actually at a time when the NIH clinical center within
our intramural program was looking for ways to really take advantage of the outstanding
infrastructure and the outstanding capabilities that the clinical center had, and actually
Bill Gahl at that time started to recognize that there could be an opportunity for really
using the clinical center more effectively, and basically got the support of the office
of rare disease research, and then actually came and talked to me.
I was then the intramural director of the institute, and we said we should really bring
something forward, we should try to do something along the lines of an Undiagnosed Diseases
Program, although I don't think it was being called it quite that way at the time.
And we got more support from then institute director Francis Collins and then went to
leadership of NIH at that time, Ellia Zerhooni [spelled phonetically], to see if this was
something of interest to NIH leadership.
And it caught on as a pilot project within the intramural program, getting the name the
Undiagnosed Diseases Program.
As I mentioned it was housed even starting then within NHGRI but it was really trans-NIH
in nature.
But it was led by Bill but he increasingly picked up other people from across the NIH
to help, especially in the NIH clinical center.
The pilot was largely regarded as incredibly successful by almost any metric, but it was
a pilot, and it was actually on a short leash funding wise, although Ellia Zerhooni was
incredibly helpful as he was literally leaving the NIH to give sufficient funds to keep it
going as a pilot.
But the money was about to run out, and Bill recognized this, that it was very clear it
had to continue, at least -- and actually our initial aim was to make sure it just stayed
healthy and adequately funded within the intramural program.
And so Bill came to me to talk about what next.
At that point actually I was then the institute director in a different office, a different
chair, a different venue.
But it was also very clear we needed to have a longer term financial stability and budgetary
stability for the program.
So we started lots of conversations around the NIH about how best to keep this incredibly
successful program going.
We found our way back to the NIH leadership, who at that point was then Francis Collins
as the new NIH director.
And conversations took place, it eventually went in front of the institute and center
directors, and the idea I think fairly spontaneously, and Jim Anderson, the head of the common fund
sitting to my right, was at that meeting.
The idea was well, why don't we make this part of the NIH common fund and why don't
we nationalize this in some fashion.
And that idea bubbled up spontaneously and I think was quickly embraced across the NIH
by the institute and center directors and really the rest is history.
It then morphed in many ways, picking up even greater representation across the NIH as all
common fund projects do.
We also picked up additional leadership partnership in the national institute of neurology -- neurological
diseases and stroke.
And you're going to hear from Walter in a second about that.
And it's been I think incredibly remarkable how quickly this network has been set up,
basically starting just with a nascent component, but a very strong one, within the intramural
program, but then having to take on all the mechanical aspects of actually having extramural
aspects of this as well, as is the case for almost all common fund programs.
And so that really is the story behind it.
I actually when I woke up this morning I was thinking what's an analogy I can make to how
this history has been and I thought of the analogy of the movie The Wizard of Oz.
And it was working for awhile, because in many ways we've sort of gone around and have
talked to people that have been -- go talk to here and get this, and then we've talked
to people just turn levers and get -- make money appear.
And all of that analogy was working great until I realized that to make the story really
effective, Bill was going to have to be Dorothy.
And I'm telling you, you didn’t want -- I've seen Bill in a dress once before, and it's
really not pretty.
So it was not a -- so that's why I didn't go with that story, I just went straight with
the facts.
So in terms of this workshop, I guess I would say these are important.
They're not purely symbolic.
On the one hand, a planning meeting like this is actually required in some fashion when
thinking about a second phase of any common fund project.
So I think their aspect of this is we have to check a box off because what's the main
focus of this meeting is thinking about the future, and in the case of common fund programs,
they are -- they get an initial phase and then they could potentially renew for a second
phase, and so the common fund will want to evaluate whether there's really robust future
directions to justify a second phase.
So there's that aspect of it, but I actually want to really emphasize that these sorts
of consortium as they grow up do absolutely benefit from gatherings like this that sort
of take stock of how they're going, and then think about future directions.
I can tell you that at NHGRI where our extramural program has many consortium that we've run
over the years starting with the human genome project but now probably many dozen or two
or three, we have workshops like this at key moments in the history of programs and consortia
because we realize how valuable it is to get people both involved and not directly involved
in programs into a room, often in Bethesda or Rockville, and strategize for a day or
two to help us think through it.
And they're always proved to be extremely valuable, and I'm sure today's meeting will
be just the same.
And so again, we think this is very, very valuable for the UDN, and we appreciate all
of you coming in.
We also recognize that this is very valuable for the community here about what's being
discussed.
Towards that end, we are live video casting this.
In fact the NHGRI communications group sitting behind me who are terrific at their job are
here live broadcasting this, but will also be video archiving the video of the day.
So -- and will be available forever and for people to access.
So that both -- remember that as you're talking, but also keep in mind, tell your colleagues.
I mean the point is there's a lot of interest in this program, both in the United States
and abroad, and I would not be surprised if when we post this video, many people from
around the world will watch in on this workshop to hear about what people gathered today had
to say about the future of this kind of activity, because they'll be interested for their institutions
and for their countries.
So with that I will turn this over to my good colleague Walter Koroshetz.
[end of transcript]