CATEGORIES: CMT Update | Research

Sneak Peak of Fall Newsletter: CMT Research Study Survey

by | Sep 16, 2014 | 2 comments

greensboro

My name is Elizabeth Francisco and I am a graduate student from the Genetic Counseling program at the University of North Carolina Greensboro. I am inviting you to participate in a research study.  The goal of my study is to learn more about the experiences of people with Charcot-Marie-Tooth (CMT) with genetic counseling and genetic testing. Adults with CMT and parents or legal guardians of someone of any age who has a diagnosis of CMT are eligible to participate

If you decide to participate in this study, you will be asked to complete a brief anonymous online survey.  The survey will take about 10-15 minutes to complete.   You do NOT have to know what genetic counseling is to participate, as we are interested in hearing from all members of the Charcot-Marie-Tooth community.  Your participation in this study is completely voluntary and you can stop at any time by closing the survey.

We hope this research will help us to better understand what people with CMT think about genetic counseling and genetic testing, and to learn more about their experiences in receiving genetic services.  This information can be helpful in improving these services for patients in the future.

If you have any questions or would like more information about this study, please contact me or my faculty advisor, Nancy Callanan using the contact information provided below.

If you would like to participate please click on the link below to view the consent form and proceed to the survey.

https://uncg.qualtrics.com/SE/?SID=SV_8oFjoYiUKaQjJrf

Thank you for considering participating in this research study.

Sincerely,

Elizabeth Francisco
Genetic Counseling Student
MS Genetic Counseling Program
University of North Carolina at Greensboro
eidecker@uncg.edu

Nancy Callanan, MS, CGC.
Program Director and Clinical Professor
MS Genetic Counseling Program
University of North Carolina at Greensboro
npcallan@uncg.edu
(336) 256-0175

Learn more on this topic

Related Blog Posts

Sixth Annual Card Party Brunch

On January 23, 2015 dedicated H.E.L.P. (Help Elliot Live Proud) Fund supporters participated in the 6th Annual Card Party Brunch and Boutique at Broken Sound County Club, Boca Raton, Florida. Record numbers flocked into the picturesque country club for a day filled with gourmet food, raffles, cards and a silent auction! HNF Board member Iris Adler increased this event by 50 new faces this year!

Double Your Donation

Corporate matching gift programs are charitable giving programs setup by corporations in which the company matches donations made by employees to eligible nonprofit organizations. For example, if a donor works for Bank of America and donates $100 to the Hereditary Neuropathy Foundation, Bank of America will double the donation by also writing a check for $100.

Taking Matters Into Your Own Hands

Do you have a rare form of CMT?

We were contacted recently from a patient with CMT2D who was looking for advice on how to make a difference. Our recommendations for all people with an ultra-rare form of CMT who want to get involved:

Now GRIN is Accessible in 141 Different Languages!

Now GRIN is Accessible in 141 Different Languages!

The Global Registry for Inherited Neuropathies (GRIN) has implemented Google Translate. Why did we choose Google? Because Google is leading the way in teaching computers how to interpret meaning, avoiding the traditional method of decoding language.

Accelerating Patient Access to Investigational Drugs in 2015

Accelerating Patient Access to Investigational Drugs in 2015

Currently the FDA is working to update the process for physicians applying for accelerated patient access to investigational drugs, while the drug or biological product is being tested in clinical trials. This will also be important for the CMT community as clinical trials for this disease are being launched.

Join the conversation

Leave a Comment

2 Comments

  1. Allison Turkezer

    I am interested in being a “guinea pig” for any and all CMT research. I am from a very large family that ALL have CMT2. My father is one of 12 children who all have it and they all had 5-6 children who have. Our family reunion looks like the Jerry Lewis Telethon..lol

    Allison Turkezer

    Reply

Submit a Comment

Your email address will not be published. Required fields are marked *

Newsletter

Join for notifications on events, campaigns, & news