New Electronic Survey 8/24

 Members, 

Dr. Christopher Gomez and Hannah Casey have worked hard to develop and get Institutional Review Board approval to create the below electronic SCA6 and SCA27B Survey Study.  This survey is intended to better understand lifestyle factors that might influence the timing and severity of symptom development and progression with a hope to better inform researchers and future generations about any potential impactful lifestyle factors. I appreciate that many of you participated in the past with the paper questionnaire that was sent through the mail and led to a successful publication just this year that we've discussed at some of our meetings (https://pubmed.ncbi.nlm.nih.gov/38217689/). This publication has led to more questions though and rather than create another paper questionnaire, I'm so happy that Dr. Gomez and Hannah successfully created a logistically simpler, more streamlined electronic questionnaire that 'uses branching logic' to make the questions more pertinent to you as you answer each question. Regardless of whether you have participated in past surveys, would you please consider participating in the below survey if you meet the below eligibility criteria? If so, please click on the 'survey' link at the bottom of Hannah's flyer below? Please also feel free to share this message with any others in your family who might be willing to participate. I attached her message as a word document also in case you want to save it or share it as a document. Since this is a launch,  I also am sharing a symbolic picture of a rocket launch I saw while walking along Satellite Beach yesterday morning--it was a beautiful surprise!

Dr. Gomez, Hannah and I are planning a Birds of Feather Zoom Session, hopefully next month (aiming for Sept 19 or 20th, but not firmly scheduled yet), to discuss how this new survey is going, other research, and any questions you might have.

Our very best wishes,

Terry (and Dr. Gomez and Hannah Casey)

ADVERTISEMENT FOR UNIVERSITY OF CHICAGO SCA6 AND SCA27B RESEARCH STUDY

Site: University of Chicago

PI: Christopher Gomez, MD, PhD

Purpose of the Research: We invite you to complete an electronic survey to help researchers learn about the genetic and environmental factors that influence the onset, severity, and progression of SCA6 and SCA27B. These surveys will collect information including genetic results (expanded and normal alleles), demographics, ataxia symptoms, medications and supplements, sports and exercise activities, sleep, drug and alcohol use, environmental exposures, long-term COVID effects, maternal pregnancy experience, family history, experiences with physical activities, activities of daily living, and mental experiences. There will be two questionnaires within this survey: The University of Chicago SCA6 and SCA27B Questionnaire followed by the PROM-Ataxia.

 

Summary of Eligibility Criteria: To best understand the disease course related to genetic and environmental effects, participants of this study must be at least 18 years old and have a diagnosis of SCA6 or SCA27B. We will ask you to provide information on your expanded and normal alleles from a gene test. Please do not complete the survey if you have not already had gene testing or do not plan to have genetic testing in the near future.

Estimated Time Commitment: We estimate that this survey will take about 30 minutes. Please note that as the online survey utilizes branching logic, participants will only answer questions relevant to their own symptoms and experiences.

Contact Information: If you have any questions or concerns regarding this survey study, please contact Hannah Casey at hannahcasey@uchicago.edu. 

Link to the Consent and Survey: If you wish to participate in the study, you can access the electronic consent and survey with this link: https://redcap.uchicago.edu/surveys/?s=KK7N44F43HMDNYY3

Hannah Casey | Senior Analyst, Clinical Research

Department of Neurology

The University of Chicago Biological Sciences Division 

5841 South Maryland Avenue |MC 2030, Room A219 |Chicago, IL 60637

Office: 773.702.4610

Primary Email: hannahcasey@uchicago.edu

Alternative Email: hannahcasey@bsd.uchicago.edu 

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