Candice Lange

If your child has been diagnosed with pachygyria, it is very important to have either Dr. Dobyns or Walsh Laboratory review the findings for a second opinion. It is common for this to be misdiagnosed. Both of the doctors are leading experts in the world on pachygyria.

As part of Walsh Lab's screening for studies they do review MRI imaging without charge.

Details they request include copies of MRI images (CD) and some abbreviated medical records, particularly the results of previous genetic testing and notes from visits with neurologists and geneticists and the completion of study specific screening forms that are provided to families (and may eventually be posted on their updated site).

Once they have all of this information it can take a few weeks for everyone to have a chance to review the details and offer suggestions. They always encourage families to check back in if they are wondering about the status to ensure the documents and MRI actually arrived.

If their research is determined to be appropriate for a family after this screening, participation involves providing a DNA sample, usually by giving a small amount of blood, as well as sharing information about medical and family history. They request DNA samples from affected individuals as well as their parents and healthy siblings, whenever possible. Reading and signing a research consent form is required before enrollment.

Walsh Labs do continue longstanding work and collaboration with Dr. Dobyns, though they each also have their own separate study protocols.

Walsh Labs doesn't offer fee for service formal readings of MRIs. You can receive their opinion on the MRIs and then choose if you would like to participate in the study at that time.

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