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Patients as Partners

Novartis 1A – Patient Lived Experience Project

About this study

Share your experiences with Charcot-Marie-Tooth disease type 1A (CMT1A) in an online survey and invited phone interview. This market research survey aims to better understand the diagnostic journey and treatment experiences of individuals diagnosed with CMT1A. This survey is being conducted by Engage Health on behalf of Novartis.

Eligibility

To be eligible, you must meet the following criteria:

  1. Must reside within the US
  2. Must speak English
  3. Must be either:
  4. An individual diagnosed with CMT1A who is 18 years of age or older.

OR

  1. A caregiver to someone diagnosed with CMT1A who is 5 years of age or older.

Participants must be willing to complete a survey and electronic RSVP, and to participate in a 60-minute telephone interview, conducted in English (there is no preparation required to participate in the interview)

How to participate

  1. Click here to go to the study site.
  2. Once on the site, click the Start button to continue with the RSVP

Once you have completed the RSVP, a member of the Engage Health team will contact you to schedule your interview, or to inform you that this research survey is full, in which case you will not participate in an interview with the study team.

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Principal Investigator

Novartis

CMT Types

  • CMT1
    • CMT1A (Gene: PMP22)

Simply CMT

  • CMTA-STAR Under the Microscope graphic titled “Reproductive Choices in CMT,” presenting a patient-friendly overview of family planning options for people living with Charcot-Marie-Tooth disease.

    Under the Microscope: Reproductive Choices in CMT

    For people living with Charcot-Marie-Tooth disease, decisions about family planning can raise complex and deeply personal questions. This Under the Microscope installment explores various reproductive options and family planning resources.