The Autism Consortium was founded in 2006 and over 8 years has advanced scientific understanding of autism, improved clinical care, and empowered families through collaborative research. It is now transitioning its programs and resources to member institutions as it has achieved its mission of fostering collaboration. The Consortium's work has led to improved patient care, greater family support, accelerated discovery, and increased research participation. It has served as a model for other regions and its transition ensures its impact will continue for years to come.
The document discusses implementing 7-day health services in the UK NHS to improve patient outcomes. It notes that mortality rates are currently 10% higher for patients admitted on weekends compared to weekdays. The NHS aims to establish minimum clinical standards for 7-day care and move routine services to be available all week. A self-assessment tool and support from an NHS team will help healthcare communities benchmark current performance and progress toward meeting all clinical standards.
The document discusses Wisconsin's efforts to collect nursing workforce data through a survey of registered nurses and forecast nursing supply and demand. It notes that over 77,000 nurses responded to the survey. Preliminary analysis of the data looks at the nursing workforce breakdown by demographics, education levels, practice settings, and hours worked. Future work will use the data to develop a statewide nursing supply model and generate nursing demand projections to estimate any gaps between supply and demand. Regional forums will review the data and make recommendations for nursing education and practice policies.
Recordind and reporting assessment results (1)Mad Jutt
This document discusses assessment, recording, and reporting in education. It defines assessment as gathering, analyzing, and reflecting on evidence to make judgments about student learning. Assessment can be formative, diagnostic, or summative. Recording involves summarizing student success and progress, while reporting provides useful feedback to students, parents, and teachers. The document outlines the assessment process and emphasizes planning assessments, incorporating various teaching methods, and using assessment data to evaluate learning and teaching.
The A3BC, Biobanks and the future of precision medicine - A3BC -
Professor Lyn March AM and Craig WIllers discuss The Australian Arthritis and Autoimmune Biobank Collaborative (A3BC), their vision for Autoimmune disease and the future of treatments, medical advances and ultimately a cure for the debilitating group of musculoskeletal diseases.
This document summarizes PCORI's efforts to engage patients in research and tool development. It discusses PCORI's priorities in comparative clinical effectiveness research and shared decision making. Examples are provided of pilot projects developing tools like a digital portal for multiple sclerosis patients and integrating patient-reported outcomes into arthritis care. PCORI's vision for a National Patient-Centered Clinical Research Network is outlined, with plans to fund Clinical Data Research Networks and Patient-Powered Research Networks through cooperative agreements.
This document summarizes the president's column from the CAPE Chronicle. It discusses how collaborative learning communities and connections with like-minded peers and colleagues can greatly enhance research in fields like epidemiology and mental health. CAPE provides these opportunities for researchers interested in mental health epidemiology. The president highlights how CAPE's small size allows for intimate interactions and networking between members. CAPE has supported many collaborative projects and initiatives over the years.
The Kidney Research Institute held its inaugural Patient Advisory Committee meeting in February 2016. The committee, composed of eight transplant recipients, provided feedback on ongoing research projects and suggested focusing on studies that directly impact patient care. Additionally, Dr. Matthew Rivara was selected for a career development program focused on assessing kidney disease symptoms. Dr. Benjamin Freedman received funding to study stem cells as models for polycystic kidney disease and potential kidney replacements. Researchers are also working on a "kidney-on-a-chip" device to test new drugs in engineered kidney tissue.
The document summarizes news from the Family Medicine Department at Keck School of Medicine. It discusses:
1) A major grant awarded to the department chair to create training for older adult healthcare.
2) Recognition of Dr. John Dennis Mull by the LA City Council for over 50 years of service to the community as a family doctor.
3) Awards received by faculty members for teaching and leadership in aging and public health.
The document discusses implementing 7-day health services in the UK NHS to improve patient outcomes. It notes that mortality rates are currently 10% higher for patients admitted on weekends compared to weekdays. The NHS aims to establish minimum clinical standards for 7-day care and move routine services to be available all week. A self-assessment tool and support from an NHS team will help healthcare communities benchmark current performance and progress toward meeting all clinical standards.
The document discusses Wisconsin's efforts to collect nursing workforce data through a survey of registered nurses and forecast nursing supply and demand. It notes that over 77,000 nurses responded to the survey. Preliminary analysis of the data looks at the nursing workforce breakdown by demographics, education levels, practice settings, and hours worked. Future work will use the data to develop a statewide nursing supply model and generate nursing demand projections to estimate any gaps between supply and demand. Regional forums will review the data and make recommendations for nursing education and practice policies.
Recordind and reporting assessment results (1)Mad Jutt
This document discusses assessment, recording, and reporting in education. It defines assessment as gathering, analyzing, and reflecting on evidence to make judgments about student learning. Assessment can be formative, diagnostic, or summative. Recording involves summarizing student success and progress, while reporting provides useful feedback to students, parents, and teachers. The document outlines the assessment process and emphasizes planning assessments, incorporating various teaching methods, and using assessment data to evaluate learning and teaching.
The A3BC, Biobanks and the future of precision medicine - A3BC -
Professor Lyn March AM and Craig WIllers discuss The Australian Arthritis and Autoimmune Biobank Collaborative (A3BC), their vision for Autoimmune disease and the future of treatments, medical advances and ultimately a cure for the debilitating group of musculoskeletal diseases.
This document summarizes PCORI's efforts to engage patients in research and tool development. It discusses PCORI's priorities in comparative clinical effectiveness research and shared decision making. Examples are provided of pilot projects developing tools like a digital portal for multiple sclerosis patients and integrating patient-reported outcomes into arthritis care. PCORI's vision for a National Patient-Centered Clinical Research Network is outlined, with plans to fund Clinical Data Research Networks and Patient-Powered Research Networks through cooperative agreements.
This document summarizes the president's column from the CAPE Chronicle. It discusses how collaborative learning communities and connections with like-minded peers and colleagues can greatly enhance research in fields like epidemiology and mental health. CAPE provides these opportunities for researchers interested in mental health epidemiology. The president highlights how CAPE's small size allows for intimate interactions and networking between members. CAPE has supported many collaborative projects and initiatives over the years.
The Kidney Research Institute held its inaugural Patient Advisory Committee meeting in February 2016. The committee, composed of eight transplant recipients, provided feedback on ongoing research projects and suggested focusing on studies that directly impact patient care. Additionally, Dr. Matthew Rivara was selected for a career development program focused on assessing kidney disease symptoms. Dr. Benjamin Freedman received funding to study stem cells as models for polycystic kidney disease and potential kidney replacements. Researchers are also working on a "kidney-on-a-chip" device to test new drugs in engineered kidney tissue.
The document summarizes news from the Family Medicine Department at Keck School of Medicine. It discusses:
1) A major grant awarded to the department chair to create training for older adult healthcare.
2) Recognition of Dr. John Dennis Mull by the LA City Council for over 50 years of service to the community as a family doctor.
3) Awards received by faculty members for teaching and leadership in aging and public health.
This document provides information about Research Australia, including its mission, board of directors, and comments from its chair and CEO. The organization's mission is to make health and medical research a higher priority in Australia. It advocates for greater investment in research from government, industry, and philanthropic sources. In 2014, Research Australia focused on advocating for the proposed Medical Research Future Fund, which would provide an additional $1 billion annually for research by 2023. Both the chair and CEO express optimism about the opportunities that increased research investment could bring.
Roderick J. Gilbert has over 15 years of experience in diversity and inclusion strategy roles. He is currently the Director for Inclusion and Diversity Strategy at the University of Mississippi Medical Center, where he develops the campus diversity strategic plan and provides cultural competency trainings. Previously, he was the Minority Physician Recruitment Program Director at Boston University Medical Center, where he increased underrepresented minority physician representation from 11% to 21%. He also has a Doctorate in Public Health from Jackson State University.
Autistic Perspectives On The Future Of Clinical Autism ResearchTony Lisko
The document summarizes concerns from autistic individuals and advocacy groups regarding recommendations from the Lancet Commission on the Future of Care and Clinical Research in Autism. Specifically, it notes that:
1) The Lancet Commission report did not adequately incorporate perspectives of autistic people and organizations run by autistic individuals.
2) The proposed classification of "profound autism" is misleading and counterproductive.
3) The Commission's recommendations are incomplete and risk misrepresenting necessary priorities for the next 5 years, which autistic individuals say should focus more on policy and support rather than clinical interventions.
The document calls for more collaborative efforts that include autistic perspectives from the outset.
The document summarizes a project between PwC's Indigenous Consulting, Griffith University First Peoples Health Unit, and AHPRA to design and deliver Aboriginal and Torres Strait Islander cultural safety training. The partnership aims to establish a consistent national approach to cultural safety learning using the NACCHO Cultural Safety Standards. Key aspects of the project include developing a cultural safety learning framework, training program, and evaluation framework to measure the impact on over 1,000 health practitioners. The partnership brings expertise in Indigenous health, cultural safety, and a national reach to help improve health outcomes for Aboriginal and Torres Strait Islander people.
The Department of Learning Health Sciences, University of Michigan Medical School: A First-of-Its Kind Department
Chaired by Charles P. Friedman, PhD
Prepared for the MIDAS Symposium, October 6, 2015
How Participatory Action Research (PAR) informed practice and policy at a Can...Olaf Kraus de Camargo
Presentation at the 77th Annual Meeting of the American Academy of Cerebral Palsy and Developmental Medicine on Sep 13th 2023 in Chicago. Olaf Kraus De Camargo, Alice Soper and Elizabeth Chambers provide an overview of the approach to engage families and patients in research with several projects as examples.
The Schizophrenia Research Institute will undergo changes in how it operates due to loss of government funding. However, the Institute had a successful year in 2014 with several important accomplishments:
1) The Australian Schizophrenia Research Bank contributed genetic data to an international study that identified over 100 genes associated with schizophrenia.
2) Institute researchers are informing mental health policies through evidence reviews on topics like suicide prevention.
3) A longitudinal child development study began providing results showing links between childhood infections and later psychological vulnerabilities.
4) Researchers continue work that may eventually reduce side effects of antipsychotic drugs and improve treatments for schizophrenia.
The document provides a history of Public Health Services and Systems Research (PHSSR) and the National Coordinating Center. It discusses how early work included developing data standards, funding research through mini-grants, and convening networking opportunities. It also summarizes how the coordinating center aims to advance the field through activities like establishing an endnote library, supporting practice-based research networks, and increasing communication and visibility of PHSSR through various channels. In closing, it reflects on lessons learned about the challenges of cross-sector coordination and promoting underrepresented areas of research like PHSSR.
How participatory action research informed practice and policy at a Canadian ...Olaf Kraus de Camargo
CanChild is a childhood disability research organization at McMaster University that has developed a culture of participatory action research (PAR) by involving families as partners. Over time, CanChild created infrastructure like an advisory board and Facebook group to facilitate engagement. Examples of PAR projects include revising a family-centered care measure with heavy parent involvement and a COVID time capsule project partnering with youth. CanChild also established training programs to build capacity for PAR. This participatory approach has informed policies by providing evidence in accessible language to various stakeholders.
The Clinical and Translational Science Awards (CTSA) Program: What can it do ...CTSciNet .org
The Clinical and Translational Science Awards (CTSA) Program aims to transform clinical and translational research. It establishes a national consortium of academic health centers to break down barriers between disciplines. The program's goals are to build research capabilities, train scientists, enhance collaboration, improve community health, and advance translational research. Each CTSA institution provides resources like training, mentoring, informatics tools, and community partnerships to researchers to improve efficiency and quality of clinical research.
2017 CoP conference program distributionncmi_meharry
This document provides an outline for a Communities of Practice Conference to be held on August 10-11, 2017 in Nashville, Tennessee. The conference will bring together content experts to provide feedback on projects conducted by the National Center for Medical Education, Development and Research (NCMEDR) in its first year, which examined training for pre-exposure prophylaxis for HIV and reducing physician bias towards LGBT populations. The conference will also discuss NCMEDR's proposed projects for year 2, which will focus on screening and services for interpersonal violence and adverse childhood experiences among vulnerable populations. The goal is to engage experts in transforming medical education to better address the needs of LGBT, homeless, and migrant populations.
Gatekeepers_VOICES and HW Stoke Report FINALPaul Astley
- The document discusses barriers faced by homeless individuals in accessing primary care services in Stoke-on-Trent, based on research conducted by Healthwatch Stoke-on-Trent, VOICES of Stoke-on-Trent, and Expert Citizens.
- Mystery shopping results found that GP practices were inconsistent in their approach to registering homeless patients, with 47.8% saying they would not register a homeless patient and 26.09% saying they were unsure.
- Homeless individuals face stigma, lack of understanding from reception staff, and other barriers that result in them receiving differentiated and potentially stigmatized service. There is a need for improved understanding of health inequalities and partnership between health, social
Genomic sequencing will soon be as routine as a blood test, allowing people to learn more about their genetic identity and how it relates to health conditions and treatment. However, without proper ethical guidelines, profit-driven research may not prioritize diseases that affect the most people. To address this, the public needs to be actively involved in all stages of genomics research to help shape priorities. One proposal is a "Wiki-genome" platform where people can voluntarily upload and share their genome data to help researchers, while also participating in discussions to guide future research. However, ensuring public participation will require addressing issues around privacy, informed consent, and who pays for sequencing.
This presentation outlines a mechanism for using the power of "Big Data", social networking and technology infrastructure to speed the process of curing a horrible disease.
This document summarizes a presentation about improving healthcare communication for children with cerebral palsy and communication disabilities. It discusses using technologies like personally controlled electronic health records to help families be more involved in healthcare decision making. It outlines strategies identified in research to improve communication in healthcare settings, including devoting enough time, ensuring access to communication tools, and increasing staff competency. Future research directions are proposed around uptake of eHealth technologies and supported decision making. Clinical implications focus on involving children and parents, using technologies like PCEHR, and developing health literacy and self-advocacy skills.
Cure care and research in English dementia policyshibley
I set out to make current dementia policy in England open to the public. This is the final talk to be given by me, Dr Shibley Rahman, at BPP Law School this evening, on cure, care and research.
The document provides updates on various global health issues including:
1) The Ebola response in West Africa was criticized for coming too late, long after the worst of the epidemic had passed. New treatment facilities remain empty as cases decline.
2) Next-generation antiretrovirals could prove game-changing for HIV treatment due to lower costs and side effects, but expanding access significantly will require more collaboration and advocacy.
3) Rickettsial diseases like spotted and typhus fevers are underrecognized causes of treatable central nervous system infections across Southeast Asia. More attention is needed for these neglected infections.
This document provides information about Research Australia, including its mission, board of directors, and comments from its chair and CEO. The organization's mission is to make health and medical research a higher priority in Australia. It advocates for greater investment in research from government, industry, and philanthropic sources. In 2014, Research Australia focused on advocating for the proposed Medical Research Future Fund, which would provide an additional $1 billion annually for research by 2023. Both the chair and CEO express optimism about the opportunities that increased research investment could bring.
Roderick J. Gilbert has over 15 years of experience in diversity and inclusion strategy roles. He is currently the Director for Inclusion and Diversity Strategy at the University of Mississippi Medical Center, where he develops the campus diversity strategic plan and provides cultural competency trainings. Previously, he was the Minority Physician Recruitment Program Director at Boston University Medical Center, where he increased underrepresented minority physician representation from 11% to 21%. He also has a Doctorate in Public Health from Jackson State University.
Autistic Perspectives On The Future Of Clinical Autism ResearchTony Lisko
The document summarizes concerns from autistic individuals and advocacy groups regarding recommendations from the Lancet Commission on the Future of Care and Clinical Research in Autism. Specifically, it notes that:
1) The Lancet Commission report did not adequately incorporate perspectives of autistic people and organizations run by autistic individuals.
2) The proposed classification of "profound autism" is misleading and counterproductive.
3) The Commission's recommendations are incomplete and risk misrepresenting necessary priorities for the next 5 years, which autistic individuals say should focus more on policy and support rather than clinical interventions.
The document calls for more collaborative efforts that include autistic perspectives from the outset.
The document summarizes a project between PwC's Indigenous Consulting, Griffith University First Peoples Health Unit, and AHPRA to design and deliver Aboriginal and Torres Strait Islander cultural safety training. The partnership aims to establish a consistent national approach to cultural safety learning using the NACCHO Cultural Safety Standards. Key aspects of the project include developing a cultural safety learning framework, training program, and evaluation framework to measure the impact on over 1,000 health practitioners. The partnership brings expertise in Indigenous health, cultural safety, and a national reach to help improve health outcomes for Aboriginal and Torres Strait Islander people.
The Department of Learning Health Sciences, University of Michigan Medical School: A First-of-Its Kind Department
Chaired by Charles P. Friedman, PhD
Prepared for the MIDAS Symposium, October 6, 2015
How Participatory Action Research (PAR) informed practice and policy at a Can...Olaf Kraus de Camargo
Presentation at the 77th Annual Meeting of the American Academy of Cerebral Palsy and Developmental Medicine on Sep 13th 2023 in Chicago. Olaf Kraus De Camargo, Alice Soper and Elizabeth Chambers provide an overview of the approach to engage families and patients in research with several projects as examples.
The Schizophrenia Research Institute will undergo changes in how it operates due to loss of government funding. However, the Institute had a successful year in 2014 with several important accomplishments:
1) The Australian Schizophrenia Research Bank contributed genetic data to an international study that identified over 100 genes associated with schizophrenia.
2) Institute researchers are informing mental health policies through evidence reviews on topics like suicide prevention.
3) A longitudinal child development study began providing results showing links between childhood infections and later psychological vulnerabilities.
4) Researchers continue work that may eventually reduce side effects of antipsychotic drugs and improve treatments for schizophrenia.
The document provides a history of Public Health Services and Systems Research (PHSSR) and the National Coordinating Center. It discusses how early work included developing data standards, funding research through mini-grants, and convening networking opportunities. It also summarizes how the coordinating center aims to advance the field through activities like establishing an endnote library, supporting practice-based research networks, and increasing communication and visibility of PHSSR through various channels. In closing, it reflects on lessons learned about the challenges of cross-sector coordination and promoting underrepresented areas of research like PHSSR.
How participatory action research informed practice and policy at a Canadian ...Olaf Kraus de Camargo
CanChild is a childhood disability research organization at McMaster University that has developed a culture of participatory action research (PAR) by involving families as partners. Over time, CanChild created infrastructure like an advisory board and Facebook group to facilitate engagement. Examples of PAR projects include revising a family-centered care measure with heavy parent involvement and a COVID time capsule project partnering with youth. CanChild also established training programs to build capacity for PAR. This participatory approach has informed policies by providing evidence in accessible language to various stakeholders.
The Clinical and Translational Science Awards (CTSA) Program: What can it do ...CTSciNet .org
The Clinical and Translational Science Awards (CTSA) Program aims to transform clinical and translational research. It establishes a national consortium of academic health centers to break down barriers between disciplines. The program's goals are to build research capabilities, train scientists, enhance collaboration, improve community health, and advance translational research. Each CTSA institution provides resources like training, mentoring, informatics tools, and community partnerships to researchers to improve efficiency and quality of clinical research.
2017 CoP conference program distributionncmi_meharry
This document provides an outline for a Communities of Practice Conference to be held on August 10-11, 2017 in Nashville, Tennessee. The conference will bring together content experts to provide feedback on projects conducted by the National Center for Medical Education, Development and Research (NCMEDR) in its first year, which examined training for pre-exposure prophylaxis for HIV and reducing physician bias towards LGBT populations. The conference will also discuss NCMEDR's proposed projects for year 2, which will focus on screening and services for interpersonal violence and adverse childhood experiences among vulnerable populations. The goal is to engage experts in transforming medical education to better address the needs of LGBT, homeless, and migrant populations.
Gatekeepers_VOICES and HW Stoke Report FINALPaul Astley
- The document discusses barriers faced by homeless individuals in accessing primary care services in Stoke-on-Trent, based on research conducted by Healthwatch Stoke-on-Trent, VOICES of Stoke-on-Trent, and Expert Citizens.
- Mystery shopping results found that GP practices were inconsistent in their approach to registering homeless patients, with 47.8% saying they would not register a homeless patient and 26.09% saying they were unsure.
- Homeless individuals face stigma, lack of understanding from reception staff, and other barriers that result in them receiving differentiated and potentially stigmatized service. There is a need for improved understanding of health inequalities and partnership between health, social
Genomic sequencing will soon be as routine as a blood test, allowing people to learn more about their genetic identity and how it relates to health conditions and treatment. However, without proper ethical guidelines, profit-driven research may not prioritize diseases that affect the most people. To address this, the public needs to be actively involved in all stages of genomics research to help shape priorities. One proposal is a "Wiki-genome" platform where people can voluntarily upload and share their genome data to help researchers, while also participating in discussions to guide future research. However, ensuring public participation will require addressing issues around privacy, informed consent, and who pays for sequencing.
This presentation outlines a mechanism for using the power of "Big Data", social networking and technology infrastructure to speed the process of curing a horrible disease.
This document summarizes a presentation about improving healthcare communication for children with cerebral palsy and communication disabilities. It discusses using technologies like personally controlled electronic health records to help families be more involved in healthcare decision making. It outlines strategies identified in research to improve communication in healthcare settings, including devoting enough time, ensuring access to communication tools, and increasing staff competency. Future research directions are proposed around uptake of eHealth technologies and supported decision making. Clinical implications focus on involving children and parents, using technologies like PCEHR, and developing health literacy and self-advocacy skills.
Cure care and research in English dementia policyshibley
I set out to make current dementia policy in England open to the public. This is the final talk to be given by me, Dr Shibley Rahman, at BPP Law School this evening, on cure, care and research.
The document provides updates on various global health issues including:
1) The Ebola response in West Africa was criticized for coming too late, long after the worst of the epidemic had passed. New treatment facilities remain empty as cases decline.
2) Next-generation antiretrovirals could prove game-changing for HIV treatment due to lower costs and side effects, but expanding access significantly will require more collaboration and advocacy.
3) Rickettsial diseases like spotted and typhus fevers are underrecognized causes of treatable central nervous system infections across Southeast Asia. More attention is needed for these neglected infections.
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.