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Announcing a Research Study: Natural History of MSP

Writer: Cure VCP Disease, Inc.
Cure VCP Disease, Inc.
10 minutes ago
1 min read

We invite participants to contact projectcreate@med.miami.edu to learn more about this study.

A recruitment flyer for the natural history of MSP, a research study

For Diseases:

  • Multisystem proteinpathy (MSP)

Background:

The goals of the study are to better understand how MSP changes people’s strength and movements as well as how it affects their daily life over time. Another goal is to collect biological specimens for future biomarker discovery. All of this will help researchers better plan and design future research studies. 

About:

The study will include 5 visits, approximately every 6 months, alternating in-person and remote. There will be a total of 3 in-person and 2 remote visits over 24 months, with the option to continue with annual in-person visits.

Enrollment Criteria:

  • Genetically confirmed mutation in gene likely to cause MSP e.g. a variant in VCP (i.e. MSP1, also known as IBMPFD: Inclusion Body Myopathy, Paget’s Disease of Bone, and Frontotemporal Dementia), HNRNPA1, HNRNPA2B1, SQSTM1, or MATR3 gene

  • Age 18 years or older at time of enrollment

  • Able and willing to comply with study procedures

Participating Sites:

  • University of Miami

  • University of Pennsylvania

  • University of Texas - San Antonio

  • Washington University in St. Louis

  • University of California - Irvine

How to Participate:

In order to participate in this study, please contact the study coordinator at one of the participating institutions by phone or by e-mail, or contact the CReATe Consortium at projectcreate@med.miami.edu.

Travel support:

Travel support for this study may be available through Cure VCP Disease. 

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