1. Research and DBP Breakout Session
Monday, December 7, 2009 1:30­3:30
Moderator: Stella Yu ScD, MPH
Overview:
Most of us in this room are interested in research, for those individuals who are not
involved in research, who are you and what are your interests? We will also identify
challenges we face in research. Keep in mind that we have a very flexible agenda.
Introductions
Names and affiliations were presented for all attendees
Challenges researchers face: Learned you would receive large grant 12 months ago
and have come a long way in a short amount of time.
What are your 2 or 3 main challenges?
We have 1,000 – 2,000 children to gather data from so we have a large
amount of data
Active clinical population, ability to collaborate
14 networks: real money to do research with
Dedicated clinicians with passion, deep and rich dedication: challenge to
come up with good questions together and agree
Ambitious time frame
Interest is there, biggest challenge is recruitment
Training: many graduate students involved and will disseminate
information after interventions are tested
IRB challenges
o Multiple site projects
o Many layers at other universities
o Great time commitment (3 months is possibly an unrealistic goal)
Issues setting up infrastructure within agencies
o School districts have their own IRBs and it can be difficult to form
relationships
“Minor miracle” accomplishments that we have done in one year
o Formed collaborations and partnerships
o Infrastructures set up already
o “Union” between agencies and all share a collective vision
Infrastructure across all programs
Communicate this issue to evaluators (this is an important policy issue)
There are existing infrastructures and we want to build upon those
o EX: DBP can add an extra fellow with the extra funding money
Thought to open database

2. EX: make database or pieces of the database (like questionnaires and
surveys) but not data available to outside and provide
training/mentoring on how to use them
Love the idea but there are constraints from funding source on who can
be externally funded. Would be difficult to mentor an individual with
little prior training.
Observation: little resources provided for evaluation although it’s being asked
EX: grants for service integration
With technical assistance, may be able to generate more data and reach
more individuals at practical level of implementation
Trainees’ access to materials as well as system of tracking who accesses it
Asset to young investigators with short window
Also include first‐year researchers, residents
Negative: difficult to do research in short window, systematic research requires
more time
R40 grants have infrastructure in place due to longevity of continuing
grants/research
CAAI has sunset revision meaning that on September 30, 2011 the
program will end unless Congress takes action.
Congress feels little pressure due to the 2011 deadline
CAAI trying to write multi‐year grants but has to consider this revision.
Open to ideas/advocacy/feedback on this issue
Could have real implications for long‐term research grants
The longer we have a project, the better the outcomes, so long‐term
grants are important
A program with great infrastructure but has no time to play out could be
a “waste of money”
Is it really possible to do this intervention work in this time frame?
May be possible, some have done this work in as little as one year
Rational way to do this though is to have more time
Experience with IRB: need to have staff to help with this process
o IRBs also get use to this and it is easier to get an IRB passed the
second time
Problems with natural environment for individuals with ASD
Schools
Ex: in east Los Angelas some children are not being identified
LENDs could possibly help with recruitment but is LEND less clinical than
previously?
Recruitment is a difficult challenge
Have numbers of children but trouble getting individuals in lower SES
In the past, clinicians have had a personal, long term relationship with
individuals but now researchers are looking for younger individuals and
the relationships don’t exist
Collaboration

3. Referrals from physicians‐ does anyone have ideas to help?
o Academic detailing in health centers (luncheons) that educate
physicians
o Strong AAP groups that are usually active. Try to find your local
chapter and talk to their leadership.
o Need a champion wherever you are‐ someone who can keep coming
back to your objectives
o Problem with initiating screening, if there is a positive result, what
does a clinician do then? Need to develop a plan for referrals and next
steps. Ex: give information on how to refer to audiology and other
resources
o Pay part of a salary for a health center practitioner (nurse) to be your
champion or use incentives like $10.00 coffee cards
o Search dx code and call families with permission from their primary
provider
Check with IRB for restrictions on this
Data showing that families may not call back but if you have
the permission to call them, then it is more effective
o Need to have a mechanism of communication to primary provider
who referred the child to “close the loop”‐ can be very reinforcing.
Did the family get there?
What are you doing about that referral?
Frustrating for physicians when they hear nothing back after
making a referral
Family willingness to participate in research
Assure families they are helping to get future answers to ASD
Receptive to knowing that someone will be helped down the road if they
participate
However, some areas haven’t had success
Less participating in research recently (last 2 years)
Families also reluctant to have children in intensive‐level intervention
therapies
o Economy plays a role: no time, some people working two jobs and
have no time, 30% of families have someone who has lost a job so
they can’t afford to take time off
Revisiting the dx code and intervention issues
Seattle has had success in searching for an ASD dx code for recruitment
Schools are a great location for underserved kids, if you can gain access to the
school, you can find the kids
Colorado has had success using a registry in which they hold Saturday visits
with childcare provided
o Currently have a long wait list for diagnosis
Could have assessments in a school setting, not a clinic, a way to avoid the
transportation issue
As a funding agency, can we facilitate this change?

4. Incorporating LEND trainees at Kennedy who want to be involved in
research requires a lot of time and can’t imagine doing this to accommodate
individuals outside their institution
Blogs
Discussion boards for students/trainees
National IRB group to assist
o May be longer term solution, but what would help short term?
Yahoo group that notifies updates. A benefit is that it is free.
However you must be aware of “filtering‐out” problems with
email
Other DBP meeting and like meetings should have an
individual present from autism treatment network. Currently
these individuals are not present at planning meetings. Ex: the
next DBP meeting is on March 4th‐6th in New Haven, CT
NDAR system but this is costly
Dr. George Jeesen is in agreement with the major challenges identified
The major challenges he sees in his CDC work are:
o Subject recruitment
o IRB‐ time and changes that need both short and long term solutions
o Hiring staff
o Inter‐agency collaboration
Solutions may include:
o Bringing in individuals from quality assurance. You could merge
health quality research and quality assurance (both must go through
IRB and gain approval to do this)
o Both CSTAs and the National children’s study use multiple site IRBs
and use community settings
Guidelines Development
AIR‐P committed to DEVELOPING guidelines and then algorithms will follow.
Currently they have working on constipation and insomnia/night‐waking
Currently there are not guidelines for these for children with ASD
Currently they are working on data processing
Need to recruit but not all kids experience these problems just because they
have ASD
Priorities for future: when to get an EEG? (Current guidelines are 10 years
old) and the use of MRIs
NICQ focuses on quality improvement and we could partner with them to
develop guides and algorithms to show outcomes of improved care or not
RAND is a methodology for evidence0based treatments
o Strict, transparent methodology
o Knowing what works
o Has completed guidelines
o There will be a paper in response to their guidelines

5. National autism center: found 11 evidence‐based treatments with different
methodology. We may not agree with all they did but it will generate
conversation
What will we do with these guidelines?
AAP will send for review to get endorsements form other organizations to
ensure agreement
AAN (10 years ago) will get endorsements on front end pre‐dissemination
AIR‐P will do the same
RAND is taking care of this and insurance will pick up on this
o Ex: can make diagnosis of ADHD with only parent questionnaires and
any other tests are frowned upon by insurance
Better guidelines are generated when multiple clinicians from diverse areas
are involved in a collaborative effort
o Is RAND clinical?
o RAND has panel of experts across disciplines who do this
o Helps to include families as well and RAND does do this. They use
national experts on their process
o Should be getting buy‐in from non‐clinical members. Should involve
community members who get use of these guidelines
Future Directions for CAAI‐ funded research: If we had unlimited resources, what
would you do or like to see happen?
Development of other developmental disability: “silo of disease of the month”
Inter‐disciplinary approach clinically not being compensated currently
Need to further work to research effects of inter‐d approach to demonstrate
benefits
If we believe this is an important service model, we need research/evidence
to see if it’s a beneficial approach
There is also a need for definitions especially research and DD
o Ex: R40 grants: some applicants didn’t know what they were applying
for
Health service research has an agenda and need to have health service
comparative effectiveness research on that agenda
Need for research agenda setting meeting: what are most relevant topics to
MCHB
Need for biological database on ASD: connect biology with phenotype
R40 Projects:
o Link to larger networks, know what other projects exist
o Need to be at least 3 year awards in future, not 2
Final Comments:
Thank you for opportunity to do this work!
With a few more years of funding, we can make such great advancements
What happens if funding ends?
o With hard sunset, program ends Sept 30, 2011. We can’t appropriate
if funding ends
o However there is a presidential focus on autism

6. o The autism lobby has been active in the past and is expected to be if
this happens
o Great to provide feedback to legislative panel tomorrow
o Systematically working with other federal agencies for other funding‐
hope is it will build on, not replace
Where do you see LEND funding and training in the future?
Obama administration took 20 million dollars from Title V of social security
act and gave to public health service act which funds CAAI
DBP, LEND and anything that comes from CAAI is bound to the hard sunset
Even if grants allotted in the ’08 cycle aren’t completed, it is dependent on
the available funding
o Should we (researchers) notify our staff that we could have our
funding cut?
o Don’t mean to be alarming, there is support in the legislature, but we
need to change the hard sunset. We should educate our legislatures
about hard sunset. Discussions about legislation should include this
o Longer term: re‐authorization CAAI
o Pediatric academic societies should be involved
o Bringing DBP new trainees into pike is dependent on this funding
cycle. We should include Dr. George Jeesen on our plans, as he has
been very involved in this initiative.