Samples need to be collected so that researchers can have access to them for research. The goal is to collect blood, saliva and tissue samples for as many MWS patients as possible, especially for those who have genetic test results in the MWS patient registry. These two components, samples (blood, saliva, tissue) and genetic test results are vital to ongoing and prospective research. Funding is needed to help cover the costs of shipping the collection kit, medical provider costs to collect the sample and administrative fees to manage the process.
Estimated cost to collect 200 sample specimens: $20,000