Cure Autism Now Announces Web-Based Clinical Trial and Research Study Listing
By Marianne Toedtman R.N., M.N.
Cure Autism Now National Resource Manager
Without scientific research, new knowledge and advances in treatment are not possible. We owe a debt of gratitude to the research community for expanding the knowledge of autism and working toward biomedical treatments. However, without family participation, autism research would progress at a much slower pace. Families are a vital link to accelerating the pace of autism research.
Cure Autism Now National Resource Manager
Family Participation Moves Autism Research Forward
Without scientific research, new knowledge and advances in treatment are not possible. We owe a debt of gratitude to the research community for expanding the knowledge of autism and working toward biomedical treatments. However, without family participation, autism research would progress at a much slower pace. Families are a vital link to accelerating the pace of autism research.
For years, Cure Autism Now has been a leader in family recruitment through its Autism Genetic Resource Exchange (AGRE). While CAN has excelled at AGRE's recruitment --families with two or more children diagnosed with an Autism Spectrum Disorder can participate –- many other families have had limited information about the latest research studies and how to participate.
Recognizing this broader need to connect families to research studies, CAN has developed a Clinical Trial and Research Study Web listing service (Visit the Family Services portion of the Autism Speaks Web site). Central to this effort is providing information to help families with autism learn about the latest studies and make informed decisions about participating in autism research. This service lists new and on-going clinical trials and research studies throughout the world. Each listing provides key information about the study including a description of the study, criteria for participation and direct contact information for the study's coordinator and principal investigators. Importantly, we have tried to make the research descriptions detailed enough that you will understand the scientific rationale behind the study and be able to ask the coordinators informed questions.
• In 2006 alone, more than 300 researchers have already applied for CAN grants.
• CAN-funded grants have resulted in 238 publications in major medical and Science journals.
“I became involved with autism research in the hope that working together, we will find answers and cures for autism that will help children lead the full lives their parents dream of.”
Sharon Montoya
Parent
Oaklawn, Ill.
“I have been amazed at how passionate, caring, and well-informed some parents and families are who have been touched by autism. Being involved in research helps them to gain knowledge as well as a measure of control over what seems a random, devastating, and life-altering event. Their passion and energy motivates me, and others, to try to understand the causes and mechanisms of the disorder. Thus, the act of parental involvement itself attracts the resources to solve the problem and overcome autism.”
Jaime A. Pineda, Ph.D.
Associate Professor
Department of Cognitive Science
University of California, San Diego
Recognizing this broader need to connect families to research studies, CAN has developed a Clinical Trial and Research Study Web listing service (Visit the Family Services portion of the Autism Speaks Web site). Central to this effort is providing information to help families with autism learn about the latest studies and make informed decisions about participating in autism research. This service lists new and on-going clinical trials and research studies throughout the world. Each listing provides key information about the study including a description of the study, criteria for participation and direct contact information for the study's coordinator and principal investigators. Importantly, we have tried to make the research descriptions detailed enough that you will understand the scientific rationale behind the study and be able to ask the coordinators informed questions.
You Can Participate!
This is an opportunity for families to make a significant contribution to scientific research. By participating in research, you help to expand the knowledge base of autism and other neurodevelopmental disorders. This information helps researchers to understand the causes, develop better treatments and – ultimately -- identify a cure. At the same time, it will allow us to help our affected family members sooner.Reasons to get involved
There is tremendous momentum in the field of autism research. As the number of researchers investigating autism continues rise, so does the need for family participation. But it is much more difficult for researchers to find affected families than it is for families to find researchers. When families contact researchers, studies can begin more quickly and keep the science moving toward a cure.• In 2006 alone, more than 300 researchers have already applied for CAN grants.
• CAN-funded grants have resulted in 238 publications in major medical and Science journals.
“I became involved with autism research in the hope that working together, we will find answers and cures for autism that will help children lead the full lives their parents dream of.”
Sharon Montoya
Parent
Oaklawn, Ill.
“I have been amazed at how passionate, caring, and well-informed some parents and families are who have been touched by autism. Being involved in research helps them to gain knowledge as well as a measure of control over what seems a random, devastating, and life-altering event. Their passion and energy motivates me, and others, to try to understand the causes and mechanisms of the disorder. Thus, the act of parental involvement itself attracts the resources to solve the problem and overcome autism.”
Jaime A. Pineda, Ph.D.
Associate Professor
Department of Cognitive Science
University of California, San Diego
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