NOT-MH-02-004: AVAILABILITY OF DATA AND BIOMATERIALS FOR GENETICS RESEARCH ON AUTISM

Department of Health
and Human Services (HHS)
NIH... Turning Discovery Into Health^®

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:  [email protected]
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