IRB approval now authorized through August 2020.
This study is available to patients born in one of the following states:
California, Indiana, Michigan, Minnesota, New Jersey, New York, North Carolina, Washington
The National MPS Society is working with researchers at the University of Washington to improve the precision in newborn screening for MPS syndromes. The researchers would like to obtain the newborn dried blood spot from your state’s newborn screening lab from the affected patient in your family. This dried blood spot will be used to measure the level of specific biomarkers (glycosaminoglycans) in the sample by an analytical technique called mass spectrometry. The goal of the study is to see if the levels of specific biomarkers can predict the type of MPS syndromes, and the severity in terms of the age of onset of syndrome-specific symptoms. This information will be critical in improving newborn screening and the diagnosis for MPS. Several states have started to screen for MPS I, and so the study is timely and will be useful for all MPS syndromes.
If you would like to participate in this study, please follow the instructions listed below.
Please return all forms to:
National MPS Society
P.O. Box 14686
Durham, NC 27709
Open and download ALL of the files linked to your state below. Please read, complete, sign, and mail these forms to the Society. If you have questions about this study, contact Leslie Urdaneta at [email protected] or 919-806-0101.
Select forms for the state where the individual with MPS was born:
California: cover letter
California: health department form
Indiana: cover letter
Indiana: health department form
Michigan: cover letter
Michigan: health department form
Minnesota: cover letter
Minnesota: health department form
New Jersey: cover letter
New Jersey: questionnaire
New Jersey: consent
New Jersey: health department form
New York: cover letter
New York: questionnaire
New York: consent
New York: health department form
North Carolina: cover letter
North Carolina: questionnaire
North Carolina: consent
North Carolina: health department form
Washington: cover letter
Washington: health department form