The Center for Cerebellar Malformations
How can I get involved?
The Gleeson lab is currently seeking participants for a study of the genetics causes cerebellar and hindbrain malformations.
Who:
Families with more than one affected child or families in which
the parents share blood ties (such as 1st cousin marriages).
Why:
To identify the genetic factors behind these disorders to help
patients now and in the future.
How:
By providing the lab with:
1.
Your consent to participate in the study
2.
Relevant medical history information
3.
Family tree information
4. A
DNA or blood sample* (about 3 tablespoons) for analysis
The lab will cover ALL costs associated with the study. All results are confidential. We will release results only to you (if
you request them). We will NOT
release the results to your doctor or insurance company.
What to expect:
We will work with you and your doctor to obtain a signed
consent form (click here for our forms page to view consent forms).
We will coordinate with you and your doctor to obtain relevant
medical records (such as copies of MRI scans).
We will work with you to obtain a family tree and medical
history (click here to view our patient questionnaire).
We will arrange for you and your family to have a small sample
of blood drawn (most likely at your family doctor office or a nearby lab).
The next step:
If you are interested
in being a part of this study, please contact us.
*
We are currently directly accepting blood samples from consanguineous (related
by blood, such as first cousin marriages) and multiplex (with multiple affected
children) familys ONLY.
v
Call for Patients with
Joubert syndrome
v Study
Forms (consents and questionnaire)