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Genetic Resources

  • NINDS Human Gene Resource Center

    The NINDS Human Genetics Resource Center at the Coriell Institute is a growing bank for human cells, DNA samples, clinical data, and information sources, to accelerate research on genetics of disorders of the nervous system. The Frequently Asked Questions section is an informative link that provides a general overview as well as information on submitting and withdrawing samples. Information is also available for Stoke, Epilepsy and Parkinsons. The NINDS Cell and DNA Repository Catalog has been updated to include samples that are available now.

  • NCBI Database of Genotype and Phenotype (dbGaP)

    The database of Genotype and Phenotype (dbGaP) was developed to archive and distribute the results of studies that have investigated the interaction of genotype and phenotype. Such studies include genome-wide association studies, medical sequencing, molecular diagnostic assays, as well as association between genotype and non-clinical traits. The advent of high-throughput, cost-effective methods for genotyping and sequencing has provided powerful tools that allow for the generation of the massive amount of genotypic data required to make these analyses possible.

  • PDGene Database

    A database for Parkinson's disease genetic association studies developed by Massachusetts General Hospital/Harvard Medical School, The Michael J. Fox Foundation and the Alzheimer Research Forum.

  • Neurological Disease Portal

    RGD has released its Neurological Disease Portal to provide researchers with easy access to data on genes, QTLs, strain models, biological processes and pathways related to neurological diseases. This resource, partially funded by NINDS also includes dynamic data analysis tools to make it a one stop resource for neuroscience researchers.

  • Accessible Genetic Research Ethics Education

    Sponsored by the Duke University School of Medicine's Office of Continuing Medical Education the primary objective of this project is to design and evaluate a series of practical web-based educational modules on genetics research ethics for members of Institutional Review Boards and investigators to facilitate the development and oversight of important research that is sensitive to the relevant ethical, legal and social issues.

  • Center for Inherited Disease Research (CIDR)

    The Center for Inherited Disease Research (CIDR) is a centralized facility established to provide genotyping and statistical genetics services for investigators seeking to identify genes that contribute to human disease.

  • Genetic Modification Clinical Research Information System (GeMCRIS)

    GeMCRIS is a comprehensive information resource and analytical tool for scientists, research participants, institutional oversight committees, sponsors, federal officials, and others with an interest in human gene transfer research. GeMCRIS allows users to access an array of information about human gene transfer trials registered with the NIH, including medical conditions under study, institutions where trials are being conducted, investigators carrying out these trials, gene products being used, route of gene product delivery, and summaries of study protocols.

  • NCBI Single Nucleotide Polymorphism

    For the dbSNP database, a central repository for both single base nucleotide substitutions and short deletion and insertion polymorphisms.

  • NIGMS Report of the First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research

    The First Community Consultation on the Responsible Collection and Use of Samples for Genetic Research, held September 25-26, 2000, was one of the first large NIH meetings to bring together diverse communities to address ways of involving these communities in genetic research. Genetic issues affecting individuals (e.g., genetic screening and privacy of genetic information) have been, and continue to be, addressed in many meetings and discussions. The consultation provided a forum for members of identified populations in the United States to exchange views formally and informally with research administrators.

  • Protecting Human Research Subjects: NIH/OPRR 1993 IRB Guidebook

    Issues raised in this section of the guidebook are specific to genetic research. General discussion of the issues of risk/benefit analysis, informed consent, privacy and confidentiality, and vulnerable populations are important and useful to IRBs. IRBs need to become familiar with the issues and be prepared to address them in the context in which they arise in their particular research setting. Because of the uncertainties involved in genetic research, IRBs may not, for some time, be able to set clear standards for investigators. What IRBs can do, however, is ensure that investigators have thought through the factors that may affect the rights and welfare of human subjects (e.g., risks to privacy, psychological risks, employment and insurance risks). IRBs should require investigators to explain their thoughts on these problems, how they plan to handle them, and how they plan to communicate them to subjects.

  • Policy and Legislation: Genetic Testing and Counseling

    Information from the national Human Genome Research Institute on Federal Policy, Hearing and Testimony related to genetic testing and counseling.

Last updated August 13, 2008