PMD Treatment Research
Stem Cells, Inc. and YOU
An important update from PMDF Chairman Don Hobson
Further, the Registry will also serve to support patient enrollment in future Clinical Trials and other PMD research projects. For example, there are currently two PMD studies being conducted at Wayne State University which would benefit greatly from the contact data contained in a Patient Registry. We are also now in contact with a consortium of clinicians and researchers from around the world who WANT to help us (including Harvard, Stanford, Mayo Clinic, Cleveland Clinic, Kennedy Krieger, Baylor, University of Pittsburgh, Children’s National in Washington DC, Oregon, OHSU, U Utah, U Rochester, U Wisconsin-Madison, U Nebraska, U Colorado and internationally in Australia, Canada and Amsterdam). We must do everything we can to facilitate these activities. This is a new project, and even though you may think that the Foundation already has your contact information, we cannot verify that it is up to date and we do not have permission to reach out to you. The participation of our PMD families is vital. If WE can’t find you, then THEY can’t help you! Please, the urgency has never been more critical than now. We don’t want the scientific community to walk away because they can’t find enough PMD patients.
What do we need?We need to take the first step toward creating a PMD Patient Registry by collecting contact information for all those who are interested in participating in future clinical trials and research projects.
Please send the following ASAP to: firstname.lastname@example.org
- your name, email address and phone number
- your PMD child(ren)’s name(s) and birthdate(s) – including all living or deceased (with date of death.)
- Copy and paste this next sentence into the email, if you agree: I have provided my contact information, and hereby grant representatives of The PMD Foundation permission to contact me to gather data for the Patient Registry, notify me about available research participation and update me on other matters related to PMD.