Now recruiting patients born in: California, Michigan, New Jersey, New York
This study is also recruiting any patients in any state who have privately banked cord blood and would provide a single-drop sample. Please contact Leslie Urdaneta directly if interested.
This study is recruiting patients with MPS I (attenuated: Hurler-Scheie or Scheie Syndromes), MPS II, MPS III, MPS IV, MPS VI, and MPS VII born in one of the following states:
California, Michigan, New Jersey, New York
IRB approval through August 2021.
Researchers at the University of Washington are working with the National MPS Society for an important study to further newborn screening efforts.
At birth, babies have blood samples collected and tested for genetic conditions. These samples are stored as drops of blood on a card. This study will collect a single dried blood spot from the card. Using mass spectrometry, researchers will measure the level of specific biomarkers (glycosaminoglycans) in the blood sample from birth. The goal of the study is to see if the levels of specific biomarkers present at birth can predict the type and severity of MPS. No additional blood work or lab tests are needed to participate; all analysis will be done on samples that already exist.
This information is critical to improve newborn screening and diagnosis of MPS. Several states have started to screen for MPS I and II, and so the study is timely and will be useful for all syndromes. This study has IRB approval through August 2021.
This study is looking for participants with the following syndrome types: MPS I (attenuated), MPS II, MPS III (all subtypes), MPS IV (all subtypes), MPS VI, and MPS VII.
(The study is now complete for severe MPS I, Hurler Syndrome. Participants with Hurler-Scheie or Scheie Syndromes are still needed for further evaluation of those with attenuated forms of MPS I.)
If you would like to participate in this study, please download your state-specific packet below.
Return all forms to [email protected] or mail to NATIONAL MPS SOCIETY, PO Box 14686, Durham NC 27709.
Select forms for the state where the individual with MPS was born: