IDEAS Promotes Research into Chromosome 15q Duplications

Promotion of research is a fundamental component of the IDEAS (Isodicentric 15 Exchange, Advocacy & Support) mission. Research activities include sponsoring bi-annual research roundtable meetings, collaborating with researchers studying chromosome 15q duplications to promote research opportunities to families, encouraging the storage of human tissues and cell lines, and working with our scientific advisors to foster additional research into chromosome 15q duplications. IDEAS is also working with the Center for Human Genetics to establish the International Chromosome 15q Duplication Syndrome Registry, targeted to launch in 2007.

For Families
Families play a critical role in increasing the understanding of chromosome 15q duplications through their participation in research studies. IDEAS provides families with information about current research studies for their consideration. Please be assured that we never release our mailing list or the names of our member families to any researcher. However, if a researcher chooses to send us information for distribution, we may pass it on to you so that you can decide if it is of interest.

Studies listed on the current studies section of the IDEAS website have been reviewed by the IDEAS board to ensure that the proposed research is safe, confidential and directly addresses an important aspect of chromosome 15q duplications. Sometimes participation in a research study is as simple as filling out a survey form. For other studies, blood samples are required from affected children, their parents, and occasionally siblings. Other research may involve procedures including EEG, MRI, or PET scanning. Thankfully, many parents have chosen to participate in research studies. Their personal contributions have provided researchers with critical information, samples, and access to affected children. The future will certainly bring more research opportunities. Continued involvement of families will be critical to provide the answers to basic research questions that one day will translate into the clinical applications we all want for our children.

For Researchers
IDEAS can help you reach families affected by chromosome 15q duplications. IDEAS will disseminate research opportunities to families through our printed materials, website and message boards. We will not provide our mailing lists but will mail research materials to families for research collaborations approved by the IDEAS Board. The following guidelines are used by the IDEAS board in determining research collaborations.

  1. The proposed research must directly address some facet of chromosome 15q duplication syndrome. This can include but is not limited to research on genetic and clinical factors, associated medical conditions, psychological issues, educational issues, and family support issues. Researchers will be asked to provide a copy of their research goals/specific aims and research design to the IDEAS Executive Director.
  2. The researcher must possess the minimum research training credentials and experience required to conduct the proposed research project. Generally, this means a doctoral degree in a health or social science field, and several years of research experience (e.g., research assistant, analyst, or post-doctoral fellow), and a record of scientific scholarship as evidenced by several co-authored publications in peer-reviewed journals.
  3. The proposed research must be reviewed and approved by an Institutional Review Board (IRB).
  4. The proposed research must include an opportunity for families to provide informed consent.
  5. The proposed research must comply with HIPAA regulations (Health Insurance Portability and Accountability Act). All approved research is required to protect the use and disclosure of Protected Health Information (PHI), and the rights of individuals with respect to their PHI.
  6. The researcher will provide periodic progress reports to IDEAS for dissemination in IDEAS publications so that families can get regular updates on the progress and findings from research projects. Researchers are encouraged to publish their results in peer reviewed journals.
  7. The proposed research will be reviewed by the IDEAS Professional Board and they will offer recommendations to the IDEAS Board.

If you are interested in collaborating with IDEAS on a research project, please contact
Nicole Cleary
IDEAS Executive Director
6699 SE Scott Drive
Portland, OR 97215
(503) 253-2872

Information Last Updated: August 11, 2006