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: questionnaire
California: consent
California: health department form

Indiana: cover letter
Indiana: questionnaire
Indiana: consent
Indiana: health department form

Michigan: cover letter
Michigan: questionnaire
Michigan: consent
Michigan: health department form

Minnesota: cover letter
Minnesota: questionnaire
Minnesota: consent
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: questionnaire
Washington: consent
Washington: health department form