CSHP

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Patient and Family Engagement in Research

Patient and Family Engagement in Research

Patient and Family Engagement in Research

Centers:

Clinical research agendas have long been driven by researchers and clinicians. The Center for Translational Genetics is shifting this research paradigm to bring the voice of patients and families to the forefront by including them as equal partners in all aspects of research from conception of ideas all the way through to the dissemination and implementation of results. This patient-centered approach assures that research focuses on questions that are important to patients and families.

Other populations impacted.

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Midwest Genetics Network

Midwest Genetics Network

Midwest Genetics Network

Centers:

This project facilitates partnerships to ensure children born with rare genetic conditions receive optimal genetic services by providing strategic directions, coordination, facilitation, education and training. Partners include families, genetic experts, health care providers, and newborn screening lab and follow-up programs. Stakeholders in IL, IN, KY, MI, MN, OH, and WI participate. MGN has built an infrastructure that links families of children who have genetic conditions to public health.

Other populations impacted.

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Inborn Errors of Metabolism Collaborative

Inborn Errors of Metabolism Collaborative

Inborn Errors of Metabolism Collaborative

Centers:

The Inborn Errors of Metabolism Collaborative (IBEMC) is a nationwide network of clinicians and researchers whose goal is to improve outcomes for people with rare genetic disorders known as Inborn Errors of Metabolism (IBEM). Over the last decade, IBEMC's network has accumulated the largest single collection of clinical information on IBEM in the world including data on more than 2,100 patients. Current work is focused on increasing racial and ethnic diversity represented by the resource.

Other populations impacted.

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Contact Info

2436 Woodlake Circle Suite 300 Okemos, MI 48864 Phone: (517) 324-8300 Fax: (517) 381-0260 Email: info@mphi.org