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CureSHANK Consortium

Business People

CureSHANK Consortium Mission

The CureSHANK Biomarkers and Outcome Measures Consortium facilitates a cooperative, globally aligned effort focused on the identification and development of novel approaches to enable successful clinical trials for Phelan-McDermid Syndrome.


The Consortium establishes a pre-competitive space for companies to advance biomarker research efforts and outcome measures in Phelan-McDermid Syndrome.  

To learn more about the vision for the Consortium, please watch the recording of our Consortium launch meeting.  

Contact Information

For more information on the CureSHANK Biomarkers and Outcome Measures Consortium, please reach out to us via email:

About the Consortium

The CureSHANK Biomarkers and Outcome Measures Consortium is convened and overseen by CureSHANK, representing the interests of the Phelan-McDermid Syndrome patient community.  The Consortium is governed by an Executive Committee selected from CureSHANK’s Board and its advisors. The Executive Committee is responsible for the Consortium’s mission, vision, strategy, and governance.  


Companies interested in scientific areas with particular promise for the development of outcome measures and/or biomarkers for Phelan-McDermid Syndrome, upon approval of the Executive Committee, are eligible to participate in the Consortium as Steering Committee Members.  The Steering Committee is responsible for identifying promising pre-competitive projects for approval by the Executive Committee and overseeing implementation by Project Teams.  Learn more about the governance structure here.

How to get involved

Companies agree to Consortium terms and pay an annual membership fee to participate in the CureSHANK Biomarkers and Outcome Measures Consortium.  For more information, please contact us at:


Benefits of Joining the Consortium

  • Bring stakeholders to the table

  • Bring solutions to the surface faster making it easier to scale them

  • Pool resources to move the field forward as a whole

  • Reduce duplicative efforts that reach the same goal or outcome

  • Tackle shared obstacles, create universal tools, create frameworks that can be applied widely

  • Streamline regulatory approval of new outcome measures and biomarkers

  • Work collectively to drive real and meaningful change

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