Lafora Disease Caregiver Registry Project
An initiative to better understand how caregiving impacts families in the Lafora disease community.
Caregiver Registry Survey
The Chelsea’s Hope Lafora Disease Caregiver Registry Survey will collect the experiences of caregivers of those with Lafora disease. It consists of approximately 230 questions, split into three sections: a Caregiver Section, a Patient Section, and a Chelsea’s Hope and Research Goals Section.
This is the first project to collect the experiences of Lafora disease caregivers. The data collected will help Chelsea’s Hope develop more targeted resources to support and address community needs. This data may also help when petitioning or applying for funding for research on Lafora disease.
Steps to Get Started:
- Start the survey by clicking the link below or scanning the QR code.
- The QR code will take you to the consent page, which details the study and what it means to participate. Select “yes” if you consent to participate or “no” if you are not interested.
- If you consent to participate, enter your email to receive a unique survey link.
- Once you receive your link, you can begin the survey. This unique link allows you to pause the survey at any time and return later with your progress saved.
- After you complete the survey, you will see a thank you message on the screen, and you can close out of the survey.
Caregiver Registry Survey Translations Coming Soon:
Spanish
French
FAQs About the Caregiver Registry Survey:
Who is eligible to participate?
You are eligible to complete the survey if you provide full-time or part-time caregiving services for someone with Lafora disease.
How long will the survey take to complete?
It should take approximately 2-3 hours to complete. Your answers to the questions determine the time it takes, as some questions are prompted by specific responses.
What if I can’t take the survey in one sitting or need to break away to tend to other responsibilities?
We know it can be hard to break away as a caregiver, and dedicate time to a survey like this. However, we hope you will prioritize this so that we can hear your voice and you can help advocate for other caregivers in your community. We designed the survey so you can take a break at any time and return later with your progress saved. Therefore, you can take the survey in smaller increments instead of in one sitting if you do so.
What will be done with the results?
We will analyze and publish the results of this survey in an academic journal, and we will also summarize and present them at a future annual Lafora Disease Science Symposium. The links to any publications and presentations will be included on this page once they become available.
The results from this survey can help Chelsea’s Hope to develop targeted resources to better support the Lafora Disease community. These results may also help us petition and appeal for organization and research funding.
What languages are available for the survey?
While the survey is currently only available in English, we are actively working on translations for Italian, Spanish, and French. We hope to have these translated versions of the survey available soon. We will announce when they are ready.
You could also take the English version and use free translation software options, such as Google Translate, Deep L Translator, Microsoft Translator, Yandex.Translate, or Reverso Translation.
If you would like to request a language translation of the survey other than English, Italian, Spanish, or French, please contact katherine@chelseashope.org and mariahmerriam@chelseashope.org. If enough people request the same language, we will make a translation for that language.
Finally, if you want to volunteer as a translator to help us efficiently translate this survey into more languages, please contact katherine@chelseashope.org and mariahmerriam@chelseashope.org.
Who do I contact if I have any questions or concerns?
Please email katherine@chelseashope.org and mariahmerriam@chelseashope.org with any questions or concerns.
Meet the Project Lead:
“I feel very passionate about this project, because I have two siblings with Lafora disease and I’ve experienced being a caregiver myself as well as seen my parents caregiving for my siblings. I’ve felt and witnessed the physical, emotional, and psychological burnout of caregiving, as well as the honor of providing care for someone you love. It’s what inspired me to pursue becoming a physician!
If you have any questions or concerns while filling out the survey, please don’t hesitate to contact me at mariahmerriam@chelseashope.org.”
The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora Disease and help accelerate the development of treatments.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 non-profit organization. EIN: 27-1008382
Chelsea’s Hope, Post Office Box 348626, Sacramento, CA 95834
