Attention California Families

 

PerkinElmer Study on Newborn Screening for Duchenne Muscular Dystrophy

When a child is born in California, a blood sample is taken for newborn screening. Any leftover sample is stored in the California Biobank. With the help of your child's stored sample, PerkinElmer will be able to develop a new newborn screening test for Duchenne. This screening test may allow for the diagnosis of affected individuals prior to the onset of symptoms.

If your child was born in California, is 10 years old or younger, has been diagnosed with Duchenne and you are willing to give approval for PerkinElmer to use your child's archived sample, your child may qualify for this IRB-approved study.

Participation will include signing a consent form. This can be done via email or mail, so no travel is required. Signing the consent form will allow PerkinElmer to access your child's leftover newborn screening sample in the California Biobank and gives permission to your child's physician to release information regarding which tests were used in determining your child's diagnosis of Duchenne Muscular Dystrophy.

There is no compensation for the archived sample provided. No risks are associated with this request since there is no direct involvement of your child. There is no need to collect a new sample. Only a de-identified, archived sample and de-identified information will be provided to PerkinElmer.

If you would like to participate, please contact one of the sites below:

Stanford Health Care
Palo Alto, CA
Carly Siskind, MS
650-721-5588
This email address is being protected from spambots. You need JavaScript enabled to view it. 

UCLA Department of Human Genetics
Los Angeles, CA
Emilie Douine-Barthelemy, MS and Stan Nelson, MD
310-267-2416
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UCSF Benioff Children's Hospital
San Franciso, CA
Audrey Glancy, RN and Jonathan B. Strober, MD
415-353-7596
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UC Davis Hospital
Sacramento, CA
Erica Goude, MS and Craig McDonald, MD
916-734-0384
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Posted 12/7/2017