Attention HED Families participating in Research!
There will be a meeting to inform participants about this research and answer any questions you may have on Thursday 21 July, 2011 from 5:30PM-6:30PM in Ballroom West!
Please read the following carefully before you come to the National Family Conference if you are participating in the Edimer Pharmaceuticals, Inc. Clinical XLHED Skin Properties Research on Friday 22 July, 2011 from 8AM-Noon. This is your chance to take advantage of services for you and your child(ren) while helping researchers find answers to ectodermal dysplasias questions. Edimer Pharmaceuticals, Inc. will use skin assessment techniques to characterize skin properties in Males affected by HED and compare these findings with unaffected Males. The researchers will use techniques to determine the number of sweat ducts and the rate of sweating. If you should have any questions, please contact Mary@nfed.org or call her at 618-566-2020.
To make the process go smoothly:
Review & Print the INFORMED CONSENT FORM Please, do not complete this form! This has to be done at the National Family Conference.
Review, Print and complete the HED Medical Questionnaire. Please, bring the completed form with you to the National Family Conference!