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What is Cinch?
What is CINCH?

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What is CINCH?

Neurologic channelopathies are caused by a genetic mutation that affects the function of ion channels in cell membranes. Andersen Tawil syndrome, the non-dystrophic myotonias, and the episodic ataxias are all rare forms of neurologic channelopathies. The underlying causes of these conditions are only partly understood and there are no established treatments. The diseases are characterized by episodes of muscle weakness, stiffness, and/or, incoordination.

CINCH (Clinical Investigation of Neurologic Channelopathies) is a collaborative effort of doctors, patient organizations, and federal health agencies that want to learn more about these diseases so that ultimately they can offer better treatments to patients.

Contributions to the Definitions for Physicians, Glossary of Terms and Frequently Asked Questions made by Ronan J. Walsh, M.D.

 

Purpose of the Consortium for the Clinical Investigation of Neurologic Channelopathies (CINCH)

The purpose of the CINCH Consortium is to:

  1. Provide information about three neurologic channelopathies:
    • Andersen-Tawil Syndrome (ATS), which is a form of periodic paralysis
    • Non-dystrophic myotonia
    • Episodic ataxia

    This information includes:
    • Data which will be gathered as part of studies to find out more about the symptoms and course of these rare diseases
    • Explanations of the symptoms and genetic causes of the diseases for patients, their families and physicians
    • Links to organizations that may be of help to the patients and their families
  2. Train neurologists to become specialists who can both treat and carry out research in these conditions.
  3. Use the information and the help of the trained investigators to find treatments for these diseases.