AVAILABILITY OF DATA AND BIOMATERIALS FOR GENETICS RESEARCH ON AUTISM RELEASE DATE: May 7, 2002 NOTICE: NOT-MH-02-004 National Institute of Mental Health (NIMH) (http://www.nimh.nih.gov) Given the major public health implications of identifying genes responsible for mental disorders, the National Institute of Mental Health (NIMH) has funded a Human Genetics Initiative (http://zork.wustl.edu/nimh/NIMH_initiative/ NIMH_initiative_link.html). The goal of this Initiative is to establish for the scientific community a national resource of demographic, clinical, diagnostic, and genetic data from individuals affected with mental disorders and their relatives, in order to aid researchers in identifying genes that produce disease vulnerability. The purpose of this Notice is to announce the recent availability of data and biomaterials (DNA samples and cell lines) in the Human Genetics Initiative to qualified investigators studying the genetic basis of autism. Electronic files of demographic and diagnostic variables necessary for genetic analysis with accompanying documentation, access to biomaterials, a code manual listing additional clinical and demographic data, and pedigree drawings are available. Descriptive information is available at http://zork.wustl.edu/nimh/ NIMH_initiative/NIMH_initiative_link.html. These data and biomaterials are distributed by the NIMH Center for Genetic Studies (http://zork. wustl.edu/nimh/), which is supported by an NIMH contract. AUTISM SAMPLE From 1995 2001, NIMH funded a genetic linkage study (R01 MH 52708: Molecular Genetics of Autism) that was conducted by Stanford University School of Medicine (Department of Genetics, Department of Psychiatry and Behavioral Sciences, Division of Child Psychiatry). The Principal Investigator was Neil Risch, Ph.D., with Richard M. Myers, Ph.D. as Co-Principal Investigator. The Clinical Director in charge of recruitment and diagnostic data collection was Donna Spiker, Ph.D., in collaboration with Linda L. Lotspeich, M.D. and Helena C. Kraemer, Ph.D. Earlier work at Stanford University on the genetics of autism was begun under the direction of Roland D. Ciaranello, M.D.(deceased in December 1995). The specific aims of the Stanford Autism Genetics Project were to ascertain pedigrees with at least two siblings affected with autism (or 2 extended family members affected with autism); obtain blood samples on affected sibs or other relatives, unaffected sibs and parents of affected individuals; conduct and establish the reliability of state-of-the-art standardized and objective diagnoses of autism using the Autism Diagnostic Interview Research (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS); and conduct a genome scan of autism multiplex sib families. Subjects in the Stanford Autism Genetics Project who gave signed informed consent to have their data and biomaterials included in this national resource are included in the NIMH Autism Genetics Initiative. Families were recruited from all over the U.S., Canada, and Australia. Anonymous data on family structure, age, sex, diagnostic interview data and status, and nonverbal IQ data, as well as lymphoblastoid cell lines, are stored, maintained and distributed by the NIMH Center for Genetic Studies (http://zork.wustl.edu/nimh/). Families included in the Initiative have at least two affected siblings or more distantly related individuals (e.g., cousins); the majority are affected sib multiplex families. A description of the NIMH Autism Genetics Initiative data archive may be found at http://zork.wustl.edu/nimh/autism_description.htm, and a table listing important descriptive information about the autism pedigrees available may be found at http://zork.wustl.edu/nimh/autable.html. ACCESS TO DATA AND BIOMATERIALS Clinical information and DNA will be distributed to experienced and qualified investigators conducting research on the genetics of autism and related disorders at recognized biomedical research facilities. Additional information may be obtained by contacting the NIMH program staff listed below under INQUIRIES. Researchers may gain access to data and biomaterials by following the instructions given at http://zork.wustl.edu/nimh/NIMH_initiative/ NIMH%20Human%20Genetics%20Initiative%20Access%20Information.htm. One requirement for access is completion of a distribution agreement (http://zork.wustl.edu/nimh/NIMH_initiative/Distribution_agree.html). Access will be granted under one of two conditions: (1) a peer-reviewed NIMH research grant to analyze these data is awarded; or (2) certification as a qualified investigator to access the data and biomaterials is obtained (see details at http://zork.wustl.edu/nimh/NIMH_initiative/ NIMH%20Human%20Genetics%20Initiative%20Access%20Information.htm). In this circumstance, DNA samples or lymphoblastoid cell lines may be obtained from the NIMH Center for Genetic Studies (http://zork.wustl.edu/nimh/) after payment of access fees as described in paragraph 10 of the distribution agreement (http://zork.wustl.edu/nimh/NIMH_initiative/Distribution _agree.html). INQUIRIES Steven O. Moldin, Ph.D. Genetics Research Branch Division of Neuroscience and Basic Behavioral Science National Institute of Mental Health 6001 Executive Boulevard, Room 7189, MSC 9643 Bethesda, MD 20892-9643 Telephone: (301) 443-2037 FAX: (301) 443-9890 Email: smoldin@mail.nih.gov


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