- Donating tissue samples to specialized repository is helpful to research in neuromuscular disorders.
- Samples can be donated during life or after death to the Stanford Biobank at Stanford University.
- The sample donors will remain anonymous to researchers using the samples.
Ever wondered how someone with a neuromuscular disorder in his or her family might contribute to research efforts in this field?
Participating in a clinical trial, donating to MDA and being part of MDA's fundraising activities are certainly good ways. But another way – one that's sometimes overlooked – is through donating samples to a tissue bank, such as the Stanford Neuromuscular Biobank at Stanford University. The Stanford Biobank collects and organizes samples of blood, muscle, skin, spinal fluid and other tissues from people with neuromuscular disorders and their unaffected family members.
The Biobank is overseen by John Day, a physician-scientist who specializes in neuromuscular disorders, has received MDA research funding, and directs the MDA neuromuscular disease clinic at Stanford.
Samples can be collected with the patient's consent during routine clinic visits, during scheduled surgical procedures, or after death, with the family's consent.
The Biobank stores these samples so that they can be shared with researchers seeking to understand how neuromuscular conditions affect the body and what might be the most meaningful treatments. The researchers will not receive any personal identifying information about the donor.
The Biobank will take care of all arrangements and any associated costs.
To find out more about tissue donation to the Stanford Biobank
For more information, see Stanford Neuromuscular Biobank, a website where you can download questions and answers, a donor information sheet and a consent form.
You can also request that information be mailed to you by sending email to firstname.lastname@example.org or calling (650) 497-9807.