Seattle Focus Group with Acceleron Pharma

Seattle Focus GroupWe are pleased to announce another opportunity to get involved with the CMTA’s Patients as Partners in Research initiative! The goal of Patients as Partners in Research is to advance the work of our Strategy to Accelerate Research (STAR) and showcase ways the patient community can participate in furthering the development of treatments, and ultimately a cure, for CMT.

As a follow up to the recent Patients as Partners in Research Focus Group that was held in New Jersey earlier this year, the CMTA will once again be partnering with the Cambridge, Massachusetts-based biopharmaceutical company Acceleron Pharma, to bring together selected patients to participate in a focus group following the upcoming CMTA Patient/Family Conference in Seattle on October 20.

The aim of this focus group is to develop a greater understanding of CMT and gather information that will help advance the field and inform the development of new therapies. Topics to be discussed will include specific muscle weaknesses, CMT subtypes, healthcare utilization, genetic testing, and current/developing treatment options.

To participate in the focus group, you must be 18 years or older with weakness in the tibialis anterior (foot drop, or difficulty lifting the front part of the foot). We are particularly interested in recruiting patients with CMT2 and CMT4 subtypes. The focus group will begin at 2:30 p.m. PST and last approximately two hours. You must be in or able to travel on your own accord to Seattle on October 20. To be considered as a participant, you must fill out an application form (see link below) and answer the application questions. There is no cost to participate in the focus group and lunch will be provided.

This is an exciting opportunity to have your voice heard and to make a difference in the CMT community! If you are interested in applying to participate, please fill out and submit the form below.

Thank you for getting involved and helping us advance CMT research.

Seattle Patients as Partners in Research Sign-Up Form

First Name: (required)

Last Name: (required)

Address: (required)

City: (required)

State (required):

ZIP/Postal Code: (required)

Your Phone: (required)

Your Email: (required)

Your Age: (required)

Enter your CMT Type/Subtype if known; otherwise enter "unknown": (required)

Some Questions About Your CMT

Please note that if you otherwise meet the criteria for inclusion, your answers to the questions below will not impact consideration for your participation in the focus group, but they will help us understand how you and other members of the group are affected by CMT. (Answers to all questions in this section are required, but if you do not know or if a description is not needed, please enter "N/A" in the text area. Thank You.)

Your Age When Diagnosed:

Have you been genetically tested for CMT?
 Yes No

If yes, did the test definitively identify your CMT Type/Subtype?
 Yes No Not Tested

Do you experience foot drop due to weakness in your legs or feet?
 Yes No Not Sure

How would you describe the weakness in your legs and feet?

Are you able to stand on your toes?
 Yes, easily Yes, with difficulty No, not at all

How would you describe your ability/inability to stand on your toes?

Do you have trouble buttoning buttons and performing other tasks with your hands?
 Yes, all the time Yes, some tasks more than others No, not at all

How would you describe your ability/inability to perform tasks with your hands?