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High Risk Baby Siblings Research Consortium
In 1997, before their 2006 merger with Autism Speaks, Inc., the National Alliance for Autism Research (NAAR) began funding baby sibling research in a collaborative effort with the National Institute of Child Health & Human Development (NICHD).1-2 The partnership aimed to “identify behavioral and biological markers for autism and eventually enable clinicians to make a more definitive diagnosis earlier than ever before.”2 This initial research eventually evolved into the High Risk Baby Siblings Research Consortium (BSRC). The High Risk Baby Siblings Research Consortium was established in 2003 as a voluntary network of researchers studying various populations of children at risk for ASD.3 Children who are siblings of individuals with autism are classified as high-risk due to an increased likelihood of recurrence of ASD. Determining the risk of sibling recurrence will bring science closer to shedding light on how genetic and environmental factors interact to cause ASD. The importance of conducting research that focuses on the recurrence of autism in siblings cannot be understated. Through this collaborative effort across many research sites, the BSRC “is discovering the earliest signs of ASD, its early risk factors, and new methods for early diagnosis.”4 The BSRC focuses on a variety of collaborative projects designed to investigate infants at risk for ASD by using a variety of methods, including behavioral and neurobiological measures.5
Past Accomplishments of the Baby Siblings Research Consortium (BSRC)
Since its inception, the BSRC has expanded to include multiple research groups consisting of 25 accomplished scientists, which represent 21 research institutions in the United States, Canada, Israel, and the United Kingdom.6 Over the years the BSRC has enrolled over 2,500 high risk infants and 1,500 low risk siblings for the BSRC database, which contains longitudinal data collected from 20 individual research sites.5 One of the earlier initiatives directed by the BSRC was the formation of the Gene Environment Contributions to Risk for Autism (GECRA) initiative. As described in the 2008 BSRC annual report, the GECRA initiative conducted a two-day meeting with presentations on immunology, mitochondrial disorders, epigenetics, environmental toxicology, and genetics, amongst other issues.7 According to the 2008 BSRC Annual Report7, the following projects were proposed after the two-day meeting between the primary investigators of the BSRC and other collaborators:
- Collection and banking of DNA samples
- Screening for mitochondrial mutations and diseases
- Investigation of vaccination rates and association with diagnostic outcomes
- Pre- and peri-natal factors associated with ASD
A feasibility report was generated at the end of the year to address possible sample sizes, logistical issues, and budget scenarios based on interested participating sites.7 Although the GECRA project failed to receive funding after review in 20098, it did serve as a stepping stone for the development of the BSRC Biorepository.5 The Treatment Toddler Network is another project associated with the BSRC. The Toddler Treatment Network began in 2006 and supports a consortium of research sites studying behavioral interventions that are applicable for children younger than 18 months.9 The Toddler Treatment Network includes several members of the BSRC. According to the 2009 BSRC Annual Report8, the long term goals of the network are to:
- Improve measurement tools regarding outcomes for toddlers and their families
- Define or identify the best practices for designing and implementing parent-delivered interventions
- Improve research designs and analytic approaches for early intervention studies
- Facilitate young researchers to develop productive programs of high quality treatment research
- Disseminate evidence of efficacy of early intervention with toddlers
The network members discussed their publicized and un-publicized findings at the 2011 International Meeting for Autism Research.5 For more information regarding the past findings and future plans of the network, please visit our Toddler Treatment Network page.
Any project with this grand of a scope is naturally going to require a way to consistently store and collect data from each research site. To achieve this consistency the BSRC agreed to administer several common measures of “cognitive, adaptive, and developmental functioning at three common age periods of 1-12 months, 18-24 months, and 36 months.”5 The future applicants of the BSRC are obligated to accept and administer these common measures in order to be accepted into the network.5
Since 2007, members of the BSRC have been responsible for over 125 published papers or book chapters related to their work, has awarded over 60 grants concerning various areas of BSRC research, and has trained over 200 doctoral students and postdoctoral fellows.5 Past publications from the BSRC related to infants and autism have focused on head circumference, recurrence in siblings, the early behavioral signs of autism, motor development, communication development, social development, language assessment, brain development, early detection, early intervention, and more.5, 7-8, 10 The data collected from these types of studies has helped to create the BSRC database, which holds longitudinal data from 2,693 high-risk infant siblings and 1,654 low risk infants.5 Research associated with the BSRC is still expanding as 18 new grants were awarded to researchers in 2011.5
Ongoing and Future Projects of Baby Siblings Research Consortium (BSRC)
Another example of BSRC expansion is the creation of the BSRC Biorepository. The project will begin in 2012 with the collection and storage of phenotypic information from 445 at risk families.5 The phenotypic information will be collected through DNA, cell lines, and plasma samples. Additionally, behavioral assessments will be conducted on all family members.10 According to Alycia Halladay, Ph.D, the director for the environmental sciences at Autism Speaks, the biorepository “will represent the largest collection of biological samples and behavioral and environmental exposure data from high risk families.”10 The BSRC biorepository will act as a valuable resource for the investigation of the genetic and environmental influences that heighten the rise of ASD and other developmental disabilities.10 The project, which is scheduled to begin in 2012, “promises to shed new light on the potential of genetic biomarkers to contribute to early detection of ASD in at-risk infants….”5 The biorepository will also serve as a long-term resource for future research concerning the detection of genetic biomarkers.
All of the data collected through BSRC related projects will be stored in the BSRC database. In 2011, all sites made an initial data contribution to the database.11 A UC Davis study aims to collect “data on environmental factors that may have influenced the development and course of ASD during critical time windows.”12 To collect this data, the project will develop a self-administered questionnaire that asks parents to report on environmental exposures that occurred during peri-conceptional, pregnancy, and postnatal periods.12 The goal of the study is “to develop standardized environmental exposure questionnaires that can provide consistent information across studies on potential environmental risk factors for autism.”13 The exposure assessment questionnaires will be used to collect environmental exposure data from the BSRC.13
The BSRC database and biorepository will serve as an invaluable resource for future BSRC projects. The BSRC database will continue to grow as funding expands and ongoing projects are completed. Some of the ongoing projects of the BSRC focus on motor functioning, developmental trajectories, and brain function (EEG).5 Two important long-term, multi-site studies, which are linked through several principal investigators of the Baby Siblings Research Consortium, are the Early Autism Risk Longitudinal Investigation (EARLI) and Infant Brain Imaging Study (IBIS). The EARLI project will study the recurrence rate of siblings to look for clues into how genetics may influence the risk for ASD, search for biological markers that could be used as early indicators for ASD, and how environmental exposures during pregnancy and early life might play a role in the development of ASD.14 The Infant Brain Imaging Study (IBIS) will examine how typically developing brains and those affected by ASD differentiate through the use of MRI technology.15