Research – Dandy-Walker Alliance

Current Dandy-Walker Research Projects

Dandy-Walker Alliance Recruiting for New Molecular Study

The Dandy-Walker Alliance is beginning a new research initiative and we need your help. We are currently seeking 20 to 30 volunteers for an empirical and molecular study of individuals with Dandy-Walker and meet at least one of the following symptoms or criteria:
– speech apraxia
– kidney abnormalities
– abnormal eye movements
… – retina problems
– coloboma of the retina (a hole in the retina)
– extra fingers or toes
– radiology report that diagnoses the “Molar Tooth Sign”

Please contact Eric Cole at eric.cole@dandy-walker.org or 301-919-2653 if you are interested in learning more and willing to make copies of any brain MRI available for the study.

Dr. Joseph Gleeson Study Seeking Participants

Dr. Joseph Gleeson of the Howard Hughes Medical Institute in California has contacted us and asked that we share some information with you about research he is doing. He is identifying a specific type of DW that includes urological disorders and is interested in speaking with families that may fall into this category.

Click here for more information on Dr. Gleeson’s project.

NIH Studies for Patients
www.ClinicalTrials.gov
Search Term: Dandy-Walker
Search Term: Hydrocephalus

Search for NIH funded clinical trials seeking individuals with Dandy-Walker

Please help us in the pursuit to find the causes and the cure for Dandy-Walker. Cures ahead!

Research Literature and Articles

National Institutes of Health research literature

(click NLM logo for list of research articles)

Univ of Chicago Press Release-Unlikely genetic suspect implicated in common brain defect
Kathy Millen, PhD, explains understanding cerebellar patterning and development.

Research Literature from NIH PubMed
www.PubMed.gov

NINDS Disorder Index
http://www.ninds.nih.gov/
Search Term: Dandy-Walker
Search Term: Hydrocephalus

New Biomedical Search Resource
http://biomedsearch.com

Developmental Disorders Research Center announces new Dandy-Walker Research Project.

The University of Chicago Genetic Services Laboratories offers OPHN1 gene testing, MRI scan reviews and recommendations regarding genetic testing.

The Official Parent’s SourceBook on
Dandy-Walker Syndrome
by Health Publica Icon Health Publications ISBN: 0597836760.

Mr. Tyrell Arnold authored an Essay on Dandy-Walker Syndrome, complete with full citations for public use.

Note: This material is for informational purposes only and does not constitute medical advice. The opinions expressed in this paper are those of the author’s and not necessarily those of the Dandy-Walker Alliance.

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