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Thanks for the talk.

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I had a question about the
characteristics

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of trustworthy researchers.

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I think it was Wilkins. Yes.

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I was just curious.

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Do you know how they determine
what those characteristics are?

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Or do you know how, like,
researchers

8
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might do that in general?

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Like, was it just sort of

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they had a bunch of data and
they

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and they tried to notice certain
patterns.

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Or do they have a particular
method

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they used to find them?

14
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Great.

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I do not know right offhand.

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And but,

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I actually have it printed out
some of

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the other kind of conceptual
models.

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A lot of people have done
focus groups with community

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members.

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Some things have been surveys
about like what people

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perceive as like what would be
like

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a trustworthy researcher or
institution,

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and then, a what is it?

25
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And this is this for me, this
anecdotally

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going to a lot of conferences
about this.

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A lot of this is informed
by like principles of community

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based

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participatory research and like
principles

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of community engaged research,

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which, does come from the
community,

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but it's also a lot of community

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minded researchers
saying, in an ideal world, this

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is,

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you know, how we can
do, like, research better.

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Go ahead. Brittany.

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I have a question
about research match.org.

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I'm wondering
how they have been publicizing

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that.

40
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So 100,000 people signed up.

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Sounds like a lot
but not compared to the

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population size.

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It's like 120 now
and it's kind of the same.

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I've given this talk over
like I know like a couple of

45
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years ago.

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It's like at 93,000.

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I'm not exactly sure.

48
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I know they were trying to,
get the word out

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through some of the, academic
partners

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that are involved.

51
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So I think there's like,

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I don't know, close to over a
thousand

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or maybe close to 1500
institutions, but,

54
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I haven't really seen it,
like on billboards and things.

55
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So it's, I think one of those
things

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that if you're not probably

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like looking for it,
you may not have seen it, but,

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yeah.

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And it's been, it's been around,
I think for at least a decade

60
00:02:05,635 --> 00:02:05,959
now.

61
00:02:05,959 --> 00:02:10,092
So maybe there were more efforts
at the beginning or more obvious

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efforts.

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I know, like, for all of us,
I don't see a ton for all of us

64
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either.

65
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But I do feel like when all of
us

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first came out,

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especially through academic
medical

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centers, it was like a big, big
thing.

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And I see like billboards being
like NIH.

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So I would expect to see like
things

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for all of us.

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But I don't really know how
what their marketing plan is

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right now.

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And then my other question is,
is it largely for healthy

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volunteers

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or is it condition specific,
like when you

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go in and say, I have type one
diet or.

78
00:02:37,791 --> 00:02:38,925
Yeah, it's both.

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You can actually you can
actually query.

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I think it's either like the
About Us

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section, but you can see
percentages.

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I can't I did sign up for it,
but I can't remember all the

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conditions.

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But I do know like there's
information

85
00:02:50,720 --> 00:02:52,839
about people with diabetes,
hypertension,

86
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maybe like

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15 or 20 different conditions
and people who are healthy

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volunteers.

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00:02:59,579 --> 00:03:02,282
And I think, also,

90
00:03:02,282 --> 00:03:03,952
like health care, like
surrogates

91
00:03:03,952 --> 00:03:05,419
who would also be interested

92
00:03:05,419 --> 00:03:06,753
in, like settings for children.

93
00:03:06,753 --> 00:03:08,890
So it's a mix of healthy
volunteers and

94
00:03:08,890 --> 00:03:11,191
people who have self-reported
conditions.

95
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And, it's a registry where
people

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00:03:13,710 --> 00:03:16,229
like proactively sign up for it.

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00:03:16,229 --> 00:03:18,031
But you don't have to

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you have to be signed up
to get the like, alerts every so

99
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often.

100
00:03:22,135 --> 00:03:23,570
But anyone in the world

101
00:03:23,570 --> 00:03:27,220
kind of like clinicaltrials.gov
can also go on research matched

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at work.

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Who doesn't want to sign up
officially

104
00:03:30,382 --> 00:03:32,746
and also see, 2000 are
available.

105
00:03:32,746 --> 00:03:34,347
So it's a mix of both.

106
00:03:34,347 --> 00:03:35,082
Thank you. Right.

107
00:03:35,082 --> 00:03:35,849
That's a good point.

108
00:03:35,849 --> 00:03:38,720
So there's hundreds of
thousands of people have

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registered.

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00:03:39,453 --> 00:03:42,656
But if tomorrow I wanted to look
at cancer

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trials

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00:03:43,190 --> 00:03:46,193
in Bethesda, I don't have to
register.

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00:03:46,193 --> 00:03:47,994
I can just use it as a search
engine.

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00:03:47,994 --> 00:03:51,073
And another just because I'm,
like, nerdy

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00:03:51,073 --> 00:03:51,898
like that.

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00:03:51,898 --> 00:03:54,697
The engine behind Research
Match is actually

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00:03:54,697 --> 00:03:55,969
clinicaltrials.gov,

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00:03:56,303 --> 00:03:59,406
so it just it looks nicer in my
opinion.

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It's more user friendly

120
00:04:00,440 --> 00:04:03,944
to see it through the research
match glove interface interface.

121
00:04:04,211 --> 00:04:06,455
But people who are like just
searching

122
00:04:06,455 --> 00:04:07,814
who haven't registered

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00:04:08,014 --> 00:04:09,804
what speeding that is actually
clinical

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00:04:09,804 --> 00:04:10,951
trials in the background

125
00:04:10,951 --> 00:04:12,966
are clinicaltrials.gov, but it
just looks

126
00:04:12,966 --> 00:04:14,588
a little bit more user friendly.

127
00:04:14,588 --> 00:04:15,422
Good to know. Right.

128
00:04:15,422 --> 00:04:17,953
So they learned a lesson perhaps
like

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00:04:17,953 --> 00:04:20,894
people aren't flocking to
clinical trials.

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00:04:20,894 --> 00:04:21,461
Dot gov.

131
00:04:21,461 --> 00:04:24,598
Because that sounds
technical and goals and

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so. Interesting.

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00:04:26,800 --> 00:04:28,034
And it's useful for research.

134
00:04:28,034 --> 00:04:30,374
I mean I play around with it a
lot

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00:04:30,374 --> 00:04:32,439
but it's research not scores.

136
00:04:33,006 --> 00:04:35,667
It's really the purpose
is to be a public listing of

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00:04:35,667 --> 00:04:36,076
trials.

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00:04:36,076 --> 00:04:38,696
I it's not always the most user
friendly,

139
00:04:38,696 --> 00:04:41,381
because you have to put in a lot
of words

140
00:04:41,381 --> 00:04:42,482
and how it comes up

141
00:04:42,482 --> 00:04:44,294
and just it's functional, but I
don't

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00:04:44,294 --> 00:04:46,253
I think it could be more user
friendly.

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So yeah, well thank you.