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Fuchs' Dystrophy Genetic Study

THE CORNEAL DYSTROPHY FOUNDATION

Fuchs' Dystrophy Genetic Study

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Event Details

This study registration is temporarily suspended until

We can process the large backlog of registrants.

Check back soon

This is an opportunity for people to participate in a Fuchs' Corneal Endothelial Genetic study at The Shiley Eye Institute's Cornea Division in San Diego.

If more people in your family have been diagnosed with Fuchs' Corneal Dystrophy

You should encourage them to participate in this study.

Please be sure to check the Frequently Asked Questions (FAQs) at the end of this document

Study status 12/29/2015

475 people have requested to join the study

       31 are international

144 Saliva kits have been mailed to date after successfully reaching them for a pre qualification phone interview

Over 270 people have been called at least twice, leaving a message each time.

135 people have been called at least 3 times who neither answered nor returned calls

The Shiley study personnel have asked the Internal Review Board to approve emailing those who have not responded to repeated telephone calls.

The Principal Investigator is Natalie Afshari, MDProfessor and Chief of Cornea at Shiley Institute at UCSD.

Basic qualifications for enrollment in this study:

  • You must have already been diagnosed with Fuchs' Endothelial Dystrophy, a disease of the cornea.
  • You must not have already in this study.

The process after you register here:

  • Your information will be forwarded to the researchers at Shiley Eye Institute in a batch approximately every week.
  • A researcher will call you.  We cannot tell you when or how long you must wait for the call.  Currently if they do not reach you they are supposed to leave a message
  • During the telephone interview you may be asked other questions.
  • If you signed up for a Saliva Kit you will be contacted prior them sending you a saliva kit with the required forms.  Please note that the entire form must be completed and properly signed and dated to be valid.
  • Frequently asked questions - we are working on a set of FAQs and will publish them here and also send them via email to everyone.

 

This initial section of the registration process is being conducted as a public service by The Corneal Dystrophy Foundation.  Any specific questions about elegibility or family registration, etc must be asked of the researcher when you receive a telephone call.  The Corneal Dystrophy Foundation is not authorized to answer any questions of this type.

Frequently Asked Questions (FAQs)

 

Although I submitted my name for the Fuchs’ Endothelial Corneal Dystrophy Study several months ago, I have not spoken to anyone from the Study. I understand from your latest status update that you were only successful in contacting a small number of people. If the study is still open, I would like to participate. Thank you for your assistance. 

Over 100 people were successfully contacted as of mid November, 2015 and 100 kits were mailed the week ending November 14, 2015.  Many of those people have reported receiving their kits.
Anyone who has registered, but has not received a call, will still be “in the queue” for a repeat telephone call.
Since so many people were not successfully contacted, the procedure has been changed so that the person calling may now leave a message on your voicemail.

I was diagnosed with Fuchs today at my eye exam. Stage 1, possibly 2. My father was diagnosed this year also. He is one of 11 siblings and he is, I believe, the third to be diagnosed with it and I believe two of them had cornea transplants. I wasn't sure if this might be relevant that you could study the family unit's impact from Fuchs

 

The Corneal Dystrophy Foundation is only registering people who wish to join the study.  A Shiley Eye  Institute researcher is in charge of calling and processing the people who register through us.

 

Questions about relevance of information such as above should be held for the telephone call you will receive.

What event? What ticket? All I did was sign up for a kit to be sent to me.

 

You did not just sign up for a kit to be sent to you.

 

 You signed up to be:

 

  •   Pre interviewed on the telephone which is why we asked for your telephone number.
  •   Sent a kit with

 

oThe Saliva test kit and instructions for using it.

 

oA document that you must complete and sign, etc. permitting the FECD study to use your genetic material.

 

At some point you will be called and the process will continue from there.

I received your email and wanted to know I I will be receiving the kit and be part of the study. Please respond. Thank you 

The Corneal Dystrophy Foundation is only registering people who wish to join the study.  A Shiley Eye  Institute researcher is in charge of calling and processing the people who register through us.

 I’m not sure if someone tried to reach me. I get a lot of sales calls. I hope I didn't refuse the call by mistake. 

 

You will just have to wait until someone calls again.  If a message wasn't left Shiley will call again.  If they don't reach you they will leave a message because they have changed their protocol on these calls.

 You have not reached me because I gave you my home phone number and I am not home during the day.

We do not have the manpower to make those changes. You can make the changes yourself at Eventbrite by using the “ticket” and other information provided when you registered to modify your

I requested a kit about 10/26, left for vacation on 10/27 so was not available to receive a phone call. Am I on a list to receive a kit? 

Most likely you will receive another telephone call.  If you miss that call they now leave a message.

I am hoping to still be included in the study

If you registered early (July – August-September) the callers were not permitted to  leave a message.  They are supposed to recall all those who were missed and if missed again, to leave a message.

 I don't recall receiving a phone call or a message on my answering system. I am still interested in participating. I live in Iowa and may have thought yours was a political call. 

 

If you registered early (July – August-September) the callers were not permitted to  leave a message.  They are supposed to recall all those who were missed.

 I did not receive a call.  I had my DNA done with 23andme.com when they were doing the health reports previously. 

 

You may have missed the call.  They are supposed to recall and now they are supposed to leave a message

 Not sure if we got a call. We get so many solicitations, hangups as well as calls meant for another professional who had the same number as we have.

 If you registered early (July – August-September) the callers were not permitted to  leave a message.  They are supposed to recall all those who were missed.

 

 

 

Have questions about Fuchs' Dystrophy Genetic Study? Contact THE CORNEAL DYSTROPHY FOUNDATION

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Where


The Shiley Eye Institute
9415 Campus Point Dr
San Diego, CA 92093

Organizer

THE CORNEAL DYSTROPHY FOUNDATION

The Corneal Dystrophy Foundation is a patient advocacy organization.

We are a US based 501 (c)(3) IRS approved Nonprofit Charitable organization founded to provide patients and the public with information and education about corneal dystrophies, potentially blinding genetic disabilities.

The Foundation provides biannual Corneal Dystrophy Symposiums, free literature, websites, online support groups and DVDs on the subject that are professional recordings of the leading corneal specialists in the US and overseas.   .  Our support communities currently have over 3000 active members who exchange information about their particular disability.

We maintain a Member Recommended Doctors' List as a reference guide.

We work closely with many corneal specialists in the US & Canada to make patients better informed so they may make better medical decisions.

Our presenters are Corneal Specialists, Genecists, Researchers and Eye Bankers who provide peer-level presentations and education at these events without charge.

SPONSOR THIS EVENT!

execdir@cornealdystrophyfoundation.org

  Contact the Organizer

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