Welcome to the Foundation Fighting Blindness (FFB) Consortium public website

 

Consortium Mission Statement

Foundation Fighting Blindness (FFB) seeks to build a Consortium for the purpose of conducting clinical studies in patients with rare inherited retinal disorders (IRDs).  The goal of FFB is to accelerate the development of treatments for IRDs.  To accomplish this, FFB plans to build centers of excellence to participate in sponsored clinical studies. Investigators from participating clinical centers will collaborate on ideas for hypotheses, study designs, analysis plans, and publications.  Data from the completed trials will be archived in an open central repository to stimulate further hypothesis generation and innovation.   


 

 

Information for New Consortium Clinical Centers

More background information for Clinical Centers and a survey are attached below.  Interested centers should submit the survey to FFB@jaeb.org.  We look forward to hearing from you.  

FFB Background Information

FFB Consortium Governance Document

FFB Consortium Clinical Site Survey

 

 

 

Consortium Data Ideas and Requests

Please refer to the following FAQs related to study ideas and using Consortium data.

You can also email rsitten@jaeb.org any time to help answer your questions.

FAQ

Answer

I have an idea for a new Consortium study. How do I submit the idea to the Consortium leadership to consider?

Fill out this form and submit it to the Coordinating Center (rsitten@jaeb.org)

I have an idea for adding an ancillary objective to an existing Consortium study. How do I submit the idea to the Consortium leadership to consider?

Fill out this form and submit it to the Coordinating Center (rsitten@jaeb.org)

I would like to use Consortium study data that I’ve collected on my own patients. Do I need to get Consortium approval to do that?

Any Consortium data not yet available on the public website (including your own patients’) needs Executive Committee approval prior to presenting/report. Contact the Coordinating Center (rsitten@jaeb.org)

 

I would like to use non-Consortium study data that I’ve collected on my own patients who are in a Consortium study. Do I need to get Consortium approval to do that?

Use of the independent ancillary study data that is not collected as part of any Consortium protocol would not be bound by Consortium governance in any way and can be used/published at the discretion of the investigator.  However, the author must include a disclaimer: “These data were collected as an independent ancillary study to an FFB Consortium protocol.  Data collection, analyses, content and conclusions presented herein are solely the responsibility of the authors and have not been reviewed or approved by the Consortium and may not reflect the view of FFB.”

I would like to conduct my own ancillary study that will include participants involved in an existing Consortium study. Do I need to get Consortium approval to do that?

Any independent ancillary study to be added to existing Consortium study participants needs Executive Committee approval prior to implementing. Contact the Coordinating Center (rsitten@jaeb.org)