Your Name: Nova

Your Email: NGetz@ciscrp.org

Event Website (if applicable): https://www.ciscrp.org/about-us/

Event Date and Location: Dear Sunny Strong,

CISCRP is currently planning a half-day patient advisory board meeting in the Boston area in early February (2/6/2019 – 2/7/2019) to help inform the design of an Amyotrophic Lateral Sclerosis (ALS) clinical trial, and is actively seeking individuals who have been diagnosed with ALS, and care partners of people living with ALS to both share their experiences with the condition, as well as feedback on the current design of a clinical trial. The goal of the meeting is not to recruit patients for the clinical trial, but rather to learn from patients how to best create a clinical trial that addresses the unique needs of people living with ALS.

At this time, CISCRP is hoping to find people with the below experiences to participate in the advisory board meeting.

Eligibility Criteria for Participants:
• ALS diagnosis
• Ages 18 + , mix males/females
• Mix of clinical trial experienced and clinical trial naïve
• Sporadic or Familial diagnosis
• Caregivers of people living with ALS

As a thank you for their time, CISCRP will provide honoraria worth $50.00 USD per meeting hour, breakfast, lunch, and reimbursements for travel associated with the meeting. Once participants are identified, CISCRP would also help organize any needed travel arrangements or lodging.

Please let me know if you are interested in participating, or are able to share the opportunity to participate with your ALS patient network, or if you have any questions for me about this initiative. I am happy to schedule a call at your convenience. If you are able to pass this message along to individuals with ALS who you think may be interested, you are welcome to share my contact information as it is written in the email signature.

Warm regards and hope to hear from you soon!

Nova Getz
Research Associate
Center for Information & Study on Clinical Research Participation (CISCRP)
Phone: 617-725-2750 x402
Email: ngetz@ciscrp.org

Kenneth and I are going, join us!