Tufts Medical Center EB Eye Disease Survey

Below you will find updated information about the Tufts Medical Center EB Eye Disease Survey, along with a link to complete the survey.


2/1/18 Survey Announcement
EB Eye Disease Survey with Thank You Gift Card

A Message from Vicki M. Chen, MD:

Hello EB Community Member,

We are doing a survey to help us understand how much eye problems affect kids and adults with Epidermolysis Bullosa (EB). Learning more about your experience will help us develop better treatments for EB eye diseases.

We have heard from our patients that some people are in such pain from abrasions and other eye problems that they stay in a darkened room until they feel better. Many EB kids and adults are in pain for days. Many people do not find relief with eye ointments that are typically recommended. We do not know how often this happens or how many individuals and families suffer from eye problems.

We want to hear about this affects caregivers and kids. Does it disrupt your regular routine? If so, how much?

By answering this survey, you will be helping us inform the research community about the needs and experiences of families facing this condition.

Here is some quick information about the survey:

  1. The survey is anonymous.
  2. It begins with screening questions that take 5 minutes or less.
  3. If you qualify, the survey may take 20 minutes to complete. As a thank you, Tufts will send you a $15 Amazon gift card.
  4. If you do not qualify, Tufts will send you a $5 Amazon gift card.
  5. At the end of the survey your email is requested, which will be used to send you the gift card.
  6.  If you have already completed the survey, you will be contacted directly by email.

If you would like to participate, please click here.

This survey involves research and participation is voluntary. It is entirely anonymous. You may stop participating at any time without penalty. The alternative to participating is not completing the survey. It should not take longer than 25 minutes to finish. There is a risk of loss of confidentiality and a risk of participating in the study is that it could be upsetting to think about the effect of eye symptoms on your family.  You will not receive a direct benefit for participating in this study. However, all participants will be offered early access to the results and an emailed copy of the study when it is published.

We simply request that it is completed only once by each family, unless more than one person in your household has EB. This will help us to be sure the results represent the EB community as a whole. Your contact information may be used to reach you for future studies.

This study has been reviewed by the Tufts Health Sciences IRB.

Thank you very much for your kind help with this survey. If you are interested in the results, or if you have any questions or concerns, please feel free to email Dr. Vicki M. Chen at vchen [at] tuftsmedicalcenter [dot] org.


5.4.17 Survey Announcement

A Message from Vicki M. Chen, MD:

Hello EB family,

We are doing a survey to help us understand how much eye problems affect kids and adults with dystrophic EB. Learning more we know about your experience will help us to develop better treatments for dystrophic EB eye diseases.

We have heard from our patients that some children are in such pain from abrasions and other eye problems that they stay in a darkened room until they feel better. Many kids are in pain for days. Many kids do not find relief with eye ointments that are typically recommended. We do not know how often this happens or how many children and families suffer from eye problems.

We also want to hear about this affects you as a caregiver, does it disrupt your regular routine? If so, how much? 

By answering this survey, you will be helping us to tell the research community how much you want better eye treatments. 

Our survey involves research and participation is voluntary. It is entirely anonymous. You may stop participating at any time without penalty. The alternative to participating is not completing the survey. It should not take longer than 30 minutes to finish. The risk of participating in the study is that it could be upsetting to think about the effect of eye symptoms on your family. Unfortunately, we will not be able to pay you for completing the survey and you will not receive any direct benefits.

We simply request that it is completed only once by each family, unless more than one person in your household has EB. This will help us to be sure the results represent the dystrophic EB community as a whole.

If you would like to participate, please click on the link below to enter your name and contact information so that we may email you the survey. Your contact information may be used to reach you for future studies, but the survey is anonymous. This study has been reviewed by the Tufts Health Sciences IRB.

https://goo.gl/forms/C3mibWiftXRca85o1

Thank you very much for your kind help with this survey. If you are interested in the results, or if you have any questions or concerns, please feel free to email Dr. Vicki M. Chen at vchen [at] tuftsmedicalcenter [dot] org.

Best regards,

Vicki M. Chen, MD
Pediatric Ophthalmology 
Tufts Medical Center, Boston, MA


5.16.17 Update

A Message from Vicki M. Chen, MD:

Hello EB Community Member,

A very big thank you to those who have filled out the EB eye survey, we had a terrific response after the last email. 

If you have offered us your contact information and have not been contacted by phone or email, please kindly click on the link above. We received a handful of responses with incomplete phone numbers and/or email addresses and would very much like to hear from you.

At first, our survey was only for Dystrophic EB patients, but we have now expanded to include all EB subtypes and patient ages.

Best regards,
Vicki M. Chen, MD
Pediatric Ophthalmology 
Tufts Medical Center, Boston, MA