Lighting the Way to a Cure

  • Financials
  • Patient Library
  • Blog
  • Calendar
FSHD Header Logo
mobile-logo

  • Who We Are
        • About Us
          • History
          • Mission
          • Our Team
        • Our Impact
          • Therapeutic Accelerator
          • Education
          • Advocacy
          • Our Partners
        • Journey To A Cure
          • 2022 Donor Impact Report
  • Understanding FSHD
        • What is FSHD
          • Symptoms
          • Diagnosis
          • Early-onset FSHD
          • Genetic Testing
        • Living with FSHD
          • Newly Diagnosed?
          • Finding Care
          • Symptom Management
          • Patient Library
        • FSHD University
          • Physical Health
          • Wellness
          • Research
  • Get Involved
        • Support Us
          • Ways to Give
          • Become a Torchbearer
          • Raise Awareness
          • Volunteer
          • Fundraise
        • Advance Research
          • Patient Involvement
          • True Cost of FSHD Study
          • Clinical Trials
          • Donate tissue
        • Connect
          • Find Your Local Chapter
          • Join the Community
          • World FSHD Alliance
          • Online Communities
        • Events
          • Walk & Roll to Cure FSHD
          • Events Calendar
          • FSHD 360 Regional Conferences
          • FSHD Connect Conference
  • Research
        • For Patients & Families
          • Advance Research
          • True Cost of FSHD Study
          • TestFSHD genetic testing
          • Clinical Trials
        • For Researchers
          • Apply for a Grant
          • Research We Have Funded
          • Resources
          • Int’l Research Congress
        • For Clinicians
          • FSHD Masterclass
          • ICD-10
        • Global Collaboration
          • Therapeutic Accelerator
          • Clinical Trial Research Network
          • Drug Development Pipeline
          • Project Mercury
  • News
    • Media Library
    • Blog
      • Living with FSHD
        • Health and Medicine
        • PT and Exercise
        • Tips and Tricks
        • Mental Health
      • FSHD Society News
      • FSHD Research
      • Fundraising & Events
      • Media & PR
    • FSHD Society Radio
    • The FSHD Advocate
  • JOIN US
  • Donate
  • JOIN US
  • Donate

Participate in COVID-19 Survey

Home / FSHD Research / Participate in COVID-19 Survey

Posted on: May 06, 2020

The FSHD Society is partnering with researchers on an important study of the impact of COVID-19 on the muscular dystrophy community. Please read this letter from Dr. Rabi Tawil and click on the link below to take the survey. Deadline is May 22, 2020. Thank you!

Dear Participant,

We are reaching out to people in the FSHD Society because we are conducting a survey to understand the effect of the COVID-19 pandemic and the social policies in place to control the pandemic on people with muscular dystrophy. The COVID-19 pandemic has caused dramatic changes across the country, and as healthcare workers and researchers interested in muscular dystrophy it is vitally important we understand the impact of these changes on people with muscular dystrophy. Your participation in this survey can help us better understand what, if any, impact this has had on you and your life, and help us target our care efforts where they are most needed for people with muscular dystrophy.  The survey will ask questions about your diagnosis, how COVID-19 and the social policies in place to combat it may affect your condition and the care you receive, and about your perceived stress during the pandemic.

This research is being conducted by the University of Rochester

Study Investigator: Rabi Tawil, MD

Study Title: A Patient-Focused Survey to Assess the Effects of the COVID-19 Pandemic on Patients with Muscular Dystrophy

Please review this Information Sheet. If you are interested in participating, please follow the link below to fill out a 20-minute survey online. Filling out this survey will help us provide better care for our patients by discovering better or alternative ways to treat and care for people with muscular dystrophy and to provide them better access to care in the future.

If you have any questions, please contact Leann Lewis at the University of Rochester, leann_lewis@urmc.rochester.edu.

Take the survey

Click the link below. If it does not direct you to the survey, copy and paste the link into your preferred web browser.

https://redcap.urmc.rochester.edu/redcap/surveys/?s=8XLPYCKJ9W

We’d like to express our gratitude to Leann Lewis for developing this survey and shepherding it through the IRB. Thank you for your consideration in participating in this important study.

Sincerely,

Rabi Tawil, MD, Jeffrey Statland, MD, and Nicholas Johnson, MD

Share

Filed Under: FSHD Research

Leave a Reply Cancel reply

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

SEARCH

Categories

  • FSHD Research
  • FSHD Society News
    • Extraordinary Measures
    • Journey to a Cure
  • Fundraising & Events
  • General
  • Living with FSHD
    • Health and Medicine
    • Mental Health
    • PT and Exercise
    • Tips and Tricks
  • Media & PR

Sign up for Email Alerts

Stay up to date with the latest FSHD news and updates from FSHD Society.

CONNECT WITH US

Proud Member World FSHD Alliance (1)
Footer-Logo-min

General Mailing Address:

75 North Main Street, Suite 1073
Randolph, MA 02368 U.S.A.

Mail Donations to:

Department 960
PO Box 4106
Woburn, MA 01888-4106

(781) 301-6060

  • DONATE
  • Donate
  • Join Us
  • Inclusivity & Equity
  • Privacy Policy
  • Contact Us
  • Glossary Of Scientific Terms
Digital Marketing by