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October 21, 2014
Dear Friends and Colleagues,
I couldn’t be more proud of our collective work over the eight years since the Autism Consortium
began. Science in the field has truly advanced, the clinical care in Greater Boston is among the
best in the country, and families are not only more knowledgeable and empowered to take the
next steps in treatment for their children, but they are also participating in new research.
I have attached a more detailed outline of our accomplishments.
Please accept my personal thanks to each of you for your involvement and many contributions
to the Autism Consortium’s work and for your belief in and commitment to our collaborative
mission.
I look forward to continuing to work with the community as we complete the transition of our
programs and resources into our member institutions. I am confident that each element is
positioned to serve the community well over the long term to further understanding of autism
and related neurodevelopmental disorders.
Again, my profound thanks to all,
Deirdre B. Phillips
Executive Director
1
October 21, 2014
SUCCESS AND TRANSITION FOR THE AUTISM CONSORTIUM
The Autism Consortium was founded in 2006 as an innovative collaboration among Boston’s diverse
clinical and scientific communities with the mission of fostering connections among clinicians,
researchers and families in order to advance our understanding of autism spectrum disorders and to
improve autism diagnosis and therapy.
The Consortium has accomplished that mission over the past eight years by establishing a more
integrated framework, setting in motion mechanisms for new collaboration among scientists, creating
a network of clinicians across institutions, and encouraging many more families to participate in
autism research.
The work of the Consortium members has led to:
● improved patient care
● greater support for affected families
● accelerated scientific discovery
● increased interest among basic and clinical scientists in the field of autism research
This very positive evolution has yielded a much stronger Massachusetts autism community that
includes excellent academic institutions, outstanding independent research centers, and top-ranked
hospitals providing integrated clinical care based on the latest scientific knowledge.
The Consortium model has been an important contributor to building the collaborative infrastructure
necessary for understanding brain disorders more broadly.
SELECTED IMPACTS OF THE AUTISM CONSORTIUM MODEL
At Massachusetts’ major research institutions, autism scientists and clinicians are increasingly
integrated on their own campuses and even more importantly working together across institutions and
disciplines to advance progress in understanding this complicated disorder.
Medical care for autism related disorders has improved and expanded as Massachusetts’ major
hospitals have developed interdisciplinary centers to deliver the highest level of autism clinical care,
integrated with promising new translational research.
The experience of families with a new diagnosis of autism spectrum disorder has improved due to a
combination of more consistent medical practices, the existence of Autism Resource Specialists who
provide support from the day of diagnosis, and access to the vast compendium of resources
developed by the Consortium and its members.
Parents who are supported in a deeper manner and are better informed about on-going research are
more willing to participate in a growing number of research studies.
2
Scientific knowledge of autism has increased through supported projects in autism genetics,
biomarker analysis, animal models, and multi-modal imaging. For example:
● The Consortium’s gene finding researchers identified several genetic mutations
associated with autism spectrum disorders, including a missing or duplicated piece of
chromosome 16 containing 25 genes.
● A study performed at Boston-area hospitals showed the importance of chromosome
microarray testing to detect genomic abnormalities in autism spectrum disorders, and
helped lead to national recommendations that chromosome microarray should be
performed on all children on the autism spectrum.
● Researchers building on these genetic and genomic discoveries used various cell-based
strategies and animal models to elucidate the pathways that lead to autism spectrum
disorders.
● Scientists with expertise in neuroimaging at Massachusetts Institute of Technology,
Boston Children’s Hospital, and Massachusetts General Hospital designed a first-of-its-
kind multimodal imaging study, using fMRI, ERP, and MEG, that has contributed to new
understanding of the underlying neurological causes of autism.
Many more researchers in Boston have brought their expertise to the field of autism research. When
the Consortium began in 2006, we could identify about 160 researchers involved in slightly more than
300 autism-related collaborations. The number of researchers now involved with autism research has
increased to over 270 with Boston’s basic science, translational, and clinical researchers engaged in
more than 1,545 autism-related collaborative efforts, a more than five-fold increase.
Activities resulting from these and related collaborations have brought funding in excess of $100
million from government, philanthropy, and industry to Greater Boston area institutions. This funding
continues to multiply as more investments are made in the brain sciences in the region.
The collaborative work of the Autism Consortium in Greater Boston has served as a model for
integrated autism research and clinical care in other parts of the country, notably in Atlanta and the
San Francisco Bay area.
MOVING FORWARD
Given the success of the Autism Consortium, the Board, after consultations with many of our
academic and clinical partners, and co-funders, has determined that the Autism Consortium has
achieved its mission and thus a discrete organization dedicated to fostering collaboration is no longer
necessary to the success of the greater effort.
3
The work the members of the Autism Consortium began is now or soon will be successfully
embedded in our academic and clinical partners and going forward, it will be enthusiastically led by all
the organizations we have touched and included. We are confident that the incredible progress we
have all witnessed will continue and that resources developed by the Consortium will remain
accessible to local and national autism researchers and clinicians working on behalf of families
everywhere.
Over the next year the Consortium will integrate its principal programs and resources into the capable
hands of its institutional members, as follows:
● The Autism Consortium Research Symposium, which fills the Joseph B. Martin Conference
Center at Harvard Medical School each year, will be broadened and continue as the
Neurodevelopmental Disorders Annual Research Symposium. This gathering for
clinicians, researchers, families, and others interested in autism and related
neurodevelopmental disorders, will advance under the shared leadership of Boston Children’s
Hospital, Massachusetts General Hospital, and Massachusetts Institute of Technology.
Academic leaders from each of these institutions have agreed to co-lead and organize this
annual event. The Anne and Paul Marcus Family Foundation has agreed to provide funding to
support and staff the Symposium.
● The Autism Consortium Research Database, with information on 2,000 individuals, will be
integrated into the National Institute of Mental Health’s National Database for Autism
Research. This process will be completed in early 2015. All members of the Consortium will
continue to receive access to this important data.
● More than 550 biological samples from various studies sponsored by the Autism Consortium
have been stored locally at the Broad Institute, with a duplicate set at the National Institute of
Mental Health. Members of the Autism Consortium will continue to be able to access the
samples for research projects.
● The Autism Consortium’s dedicated Autism Resource Specialists have served more than
10,000 families to date. While based at five different hospitals, they have worked together as a
statewide team to develop programming for parents, children, and health care providers and to
curate an invaluable set of resources made available through the Consortium’s website. Going
forward, the team will be known as the Family Support Network, with a collaboration fostered
by co-leaders from Boston Children’s Hospital and the Lurie Center for Autism at
Massachusetts General Hospital for Children. The Nancy Lurie Marks Family Foundation and
the Anne and Paul Marcus Family Foundation together have agreed to provide partial funding
for the team at all five sites through 2016 with the expectation that individual hospitals will
raise funds for future support of this incredibly important resource for their clinics and the
families they serve.
4
● The Consortium’s Biomarkers Project, currently underway at five clinical sites across
Massachusetts, is providing important insights into best practices for engaging clinicians in
autism research and for organizing multi-site research in a defined geographic area.
Recruitment will continue in 2015 with ongoing leadership from Boston Children’s Hospital.
The Autism Consortium Board, Steering Committee, Executive Director, and Staff will continue to
facilitate the transition of the Consortium’s resources to the member institutions through 2015.
WITH GREAT THANKS
The Autism Consortium leadership is extremely proud and thankful for all that we have accomplished
together. We are grateful to our 125 individual members and to the 17 institutional members who are
making contributions every day to improving the lives of children with autism related disorders and
their families.
We also want to thank the many leaders - both institutions and individuals - who have stepped forward
to embrace our vision. Early on, we had the benefit of input from many scientific leaders including: Dr.
Susan Hockfield, then President of Massachusetts Institute of Technology; Dr. Eric Lander, Founding
Director of The Broad Institute; and Dr. Steven Hyman, then Provost of Harvard University and now
Director of the Stanley Center for Psychiatric Research at the Broad Institute of Massachusetts
Institute of Technology and Harvard. The leadership of Massachusetts General Hospital, Boston
Children’s Hospital, Boston Medical Center, Tufts Medical Center, University of Massachusetts
Memorial Medical Center, Beth Israel Deaconess Medical Center, and McLean Hospital contributed to
the development and accomplishments of this collaboration. Dr. Thomas Insel, Director of the
National Institute of Mental Health, brought wise and consistent counsel throughout.
We also thank our scientific advisors for their thoughtful guidance - Dr. James Gusella of
Massachusetts General Hospital, Dr. Mriganka Sur of Massachusetts Institute of Technology, and Dr.
Christopher Walsh of Boston Children’s Hospital - and our inter-institutional Steering Committee that
helped set priorities and assess projects.
We wish to offer special thanks to the Nancy Lurie Marks Family Foundation, the Simons Foundation,
the Klarman Family Foundation, The Anne and Paul Marcus Family Foundation and an anonymous
Boston-based foundation, and many individual donors, for the philanthropic funding we received. We
simply could not have done this without everyone’s support and generosity.
As we work to complete our transition, our heartfelt thanks to all for believing in the mission of the
Autism Consortium and the power of collaboration here in Boston. That power is alive and ever-
growing. Our collective impact on the brain sciences has been felt across the field of
neurodevelopmental disorders. Together, we have accomplished a tremendous amount.
The vast array of research programs now underway in Massachusetts will continue to have far
reaching impacts on all patients and families affected by brain-related disorders. We live in an era of
exhilarating discovery where we continue to make extraordinary progress in unraveling the mysteries
of the human brain. On behalf of all of its members, we are proud of the part that the Autism
Consortium is playing in that continuing discovery and progress.

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Success and Transition

  • 1. October 21, 2014 Dear Friends and Colleagues, I couldn’t be more proud of our collective work over the eight years since the Autism Consortium began. Science in the field has truly advanced, the clinical care in Greater Boston is among the best in the country, and families are not only more knowledgeable and empowered to take the next steps in treatment for their children, but they are also participating in new research. I have attached a more detailed outline of our accomplishments. Please accept my personal thanks to each of you for your involvement and many contributions to the Autism Consortium’s work and for your belief in and commitment to our collaborative mission. I look forward to continuing to work with the community as we complete the transition of our programs and resources into our member institutions. I am confident that each element is positioned to serve the community well over the long term to further understanding of autism and related neurodevelopmental disorders. Again, my profound thanks to all, Deirdre B. Phillips Executive Director
  • 2. 1 October 21, 2014 SUCCESS AND TRANSITION FOR THE AUTISM CONSORTIUM The Autism Consortium was founded in 2006 as an innovative collaboration among Boston’s diverse clinical and scientific communities with the mission of fostering connections among clinicians, researchers and families in order to advance our understanding of autism spectrum disorders and to improve autism diagnosis and therapy. The Consortium has accomplished that mission over the past eight years by establishing a more integrated framework, setting in motion mechanisms for new collaboration among scientists, creating a network of clinicians across institutions, and encouraging many more families to participate in autism research. The work of the Consortium members has led to: ● improved patient care ● greater support for affected families ● accelerated scientific discovery ● increased interest among basic and clinical scientists in the field of autism research This very positive evolution has yielded a much stronger Massachusetts autism community that includes excellent academic institutions, outstanding independent research centers, and top-ranked hospitals providing integrated clinical care based on the latest scientific knowledge. The Consortium model has been an important contributor to building the collaborative infrastructure necessary for understanding brain disorders more broadly. SELECTED IMPACTS OF THE AUTISM CONSORTIUM MODEL At Massachusetts’ major research institutions, autism scientists and clinicians are increasingly integrated on their own campuses and even more importantly working together across institutions and disciplines to advance progress in understanding this complicated disorder. Medical care for autism related disorders has improved and expanded as Massachusetts’ major hospitals have developed interdisciplinary centers to deliver the highest level of autism clinical care, integrated with promising new translational research. The experience of families with a new diagnosis of autism spectrum disorder has improved due to a combination of more consistent medical practices, the existence of Autism Resource Specialists who provide support from the day of diagnosis, and access to the vast compendium of resources developed by the Consortium and its members. Parents who are supported in a deeper manner and are better informed about on-going research are more willing to participate in a growing number of research studies.
  • 3. 2 Scientific knowledge of autism has increased through supported projects in autism genetics, biomarker analysis, animal models, and multi-modal imaging. For example: ● The Consortium’s gene finding researchers identified several genetic mutations associated with autism spectrum disorders, including a missing or duplicated piece of chromosome 16 containing 25 genes. ● A study performed at Boston-area hospitals showed the importance of chromosome microarray testing to detect genomic abnormalities in autism spectrum disorders, and helped lead to national recommendations that chromosome microarray should be performed on all children on the autism spectrum. ● Researchers building on these genetic and genomic discoveries used various cell-based strategies and animal models to elucidate the pathways that lead to autism spectrum disorders. ● Scientists with expertise in neuroimaging at Massachusetts Institute of Technology, Boston Children’s Hospital, and Massachusetts General Hospital designed a first-of-its- kind multimodal imaging study, using fMRI, ERP, and MEG, that has contributed to new understanding of the underlying neurological causes of autism. Many more researchers in Boston have brought their expertise to the field of autism research. When the Consortium began in 2006, we could identify about 160 researchers involved in slightly more than 300 autism-related collaborations. The number of researchers now involved with autism research has increased to over 270 with Boston’s basic science, translational, and clinical researchers engaged in more than 1,545 autism-related collaborative efforts, a more than five-fold increase. Activities resulting from these and related collaborations have brought funding in excess of $100 million from government, philanthropy, and industry to Greater Boston area institutions. This funding continues to multiply as more investments are made in the brain sciences in the region. The collaborative work of the Autism Consortium in Greater Boston has served as a model for integrated autism research and clinical care in other parts of the country, notably in Atlanta and the San Francisco Bay area. MOVING FORWARD Given the success of the Autism Consortium, the Board, after consultations with many of our academic and clinical partners, and co-funders, has determined that the Autism Consortium has achieved its mission and thus a discrete organization dedicated to fostering collaboration is no longer necessary to the success of the greater effort.
  • 4. 3 The work the members of the Autism Consortium began is now or soon will be successfully embedded in our academic and clinical partners and going forward, it will be enthusiastically led by all the organizations we have touched and included. We are confident that the incredible progress we have all witnessed will continue and that resources developed by the Consortium will remain accessible to local and national autism researchers and clinicians working on behalf of families everywhere. Over the next year the Consortium will integrate its principal programs and resources into the capable hands of its institutional members, as follows: ● The Autism Consortium Research Symposium, which fills the Joseph B. Martin Conference Center at Harvard Medical School each year, will be broadened and continue as the Neurodevelopmental Disorders Annual Research Symposium. This gathering for clinicians, researchers, families, and others interested in autism and related neurodevelopmental disorders, will advance under the shared leadership of Boston Children’s Hospital, Massachusetts General Hospital, and Massachusetts Institute of Technology. Academic leaders from each of these institutions have agreed to co-lead and organize this annual event. The Anne and Paul Marcus Family Foundation has agreed to provide funding to support and staff the Symposium. ● The Autism Consortium Research Database, with information on 2,000 individuals, will be integrated into the National Institute of Mental Health’s National Database for Autism Research. This process will be completed in early 2015. All members of the Consortium will continue to receive access to this important data. ● More than 550 biological samples from various studies sponsored by the Autism Consortium have been stored locally at the Broad Institute, with a duplicate set at the National Institute of Mental Health. Members of the Autism Consortium will continue to be able to access the samples for research projects. ● The Autism Consortium’s dedicated Autism Resource Specialists have served more than 10,000 families to date. While based at five different hospitals, they have worked together as a statewide team to develop programming for parents, children, and health care providers and to curate an invaluable set of resources made available through the Consortium’s website. Going forward, the team will be known as the Family Support Network, with a collaboration fostered by co-leaders from Boston Children’s Hospital and the Lurie Center for Autism at Massachusetts General Hospital for Children. The Nancy Lurie Marks Family Foundation and the Anne and Paul Marcus Family Foundation together have agreed to provide partial funding for the team at all five sites through 2016 with the expectation that individual hospitals will raise funds for future support of this incredibly important resource for their clinics and the families they serve.
  • 5. 4 ● The Consortium’s Biomarkers Project, currently underway at five clinical sites across Massachusetts, is providing important insights into best practices for engaging clinicians in autism research and for organizing multi-site research in a defined geographic area. Recruitment will continue in 2015 with ongoing leadership from Boston Children’s Hospital. The Autism Consortium Board, Steering Committee, Executive Director, and Staff will continue to facilitate the transition of the Consortium’s resources to the member institutions through 2015. WITH GREAT THANKS The Autism Consortium leadership is extremely proud and thankful for all that we have accomplished together. We are grateful to our 125 individual members and to the 17 institutional members who are making contributions every day to improving the lives of children with autism related disorders and their families. We also want to thank the many leaders - both institutions and individuals - who have stepped forward to embrace our vision. Early on, we had the benefit of input from many scientific leaders including: Dr. Susan Hockfield, then President of Massachusetts Institute of Technology; Dr. Eric Lander, Founding Director of The Broad Institute; and Dr. Steven Hyman, then Provost of Harvard University and now Director of the Stanley Center for Psychiatric Research at the Broad Institute of Massachusetts Institute of Technology and Harvard. The leadership of Massachusetts General Hospital, Boston Children’s Hospital, Boston Medical Center, Tufts Medical Center, University of Massachusetts Memorial Medical Center, Beth Israel Deaconess Medical Center, and McLean Hospital contributed to the development and accomplishments of this collaboration. Dr. Thomas Insel, Director of the National Institute of Mental Health, brought wise and consistent counsel throughout. We also thank our scientific advisors for their thoughtful guidance - Dr. James Gusella of Massachusetts General Hospital, Dr. Mriganka Sur of Massachusetts Institute of Technology, and Dr. Christopher Walsh of Boston Children’s Hospital - and our inter-institutional Steering Committee that helped set priorities and assess projects. We wish to offer special thanks to the Nancy Lurie Marks Family Foundation, the Simons Foundation, the Klarman Family Foundation, The Anne and Paul Marcus Family Foundation and an anonymous Boston-based foundation, and many individual donors, for the philanthropic funding we received. We simply could not have done this without everyone’s support and generosity. As we work to complete our transition, our heartfelt thanks to all for believing in the mission of the Autism Consortium and the power of collaboration here in Boston. That power is alive and ever- growing. Our collective impact on the brain sciences has been felt across the field of neurodevelopmental disorders. Together, we have accomplished a tremendous amount. The vast array of research programs now underway in Massachusetts will continue to have far reaching impacts on all patients and families affected by brain-related disorders. We live in an era of exhilarating discovery where we continue to make extraordinary progress in unraveling the mysteries of the human brain. On behalf of all of its members, we are proud of the part that the Autism Consortium is playing in that continuing discovery and progress.