Consent Form for Participation in Clinical Information and Sample Donation
By signing this consent form, you are not giving up your legal right to revoke at any time your consent to use your sample and/or clinical information and require that the PXE International Registry and Biobank (PIRB) destroy your sample and/or clinical information (if any remains in its possession or control). However, if your sample has been analyzed in connection with research prior to revocation of your consent, it may not be possible to locate your sample and it is not possible to remove the data from the research project. Your signature means that you understand the information given to you, you accept the provisions in this form, and you agree to donate a sample and/or your clinical information. If you have any questions, please speak to the PIRB Administrator before you sign this form.