A need for classification agreement: perspectives from an advocacy group.
There is a need to focus on the classification of the ectodermal dysplasia syndromes to reach consensus on a classification that satisfies all interested parties. However, whatever scheme is developed, it will have far-reaching application for other groups of disorders for which classification is complicated by the number of interested parties and advances in diagnostic acumen. Consensus among interested parties is necessary for communication among the parties whether it be for equitable distribution of funds, correctness of diagnosis and treatment, or focusing research efforts. Classification of the ectodermal dysplasia syndromes will enable advocacy organizations like the National Foundation for Ectodermal Dysplasias to better serve constituents, to use limited resources more effectively, to move research forward, to find cures and to bring continued hope for the future to those we serve. Having international agreement on these issues will enable all of our organizations to move forward with confidence.
Richter
Mary Kaye
MK
National Foundation for Ectodermal Dysplasias, 410 East Main St., Mascoutah, IL 62258, USA. mary@nfed.org
D000015:Abnormalities, Multiple / Q000145:classification* / Q000175:diagnosis / Q000503:physiopathology; D003937:Diagnosis, Differential; D004476:Ectodermal Dysplasia / Q000145:classification* / Q000175:diagnosis / Q000503:physiopathology; D006801:Humans; D010344:Patient Advocacy; D012106:Research