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 ffb@jaeb.org at any time to request assistance.

     

   

 

Study Ideas

 

Frequently Asked Questions

First Step

Committee Approval Required?

Governance Document Section

A

I have an idea for a new FFB Consortium study

Complete a Protocol Idea Form and submit it to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee

6.1 New Studies

B

I have an idea for adding an ancillary objective to an existing Consortium study

Complete a Consortium Ancillary Study Idea Form and submit it to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee

6.1 New Studies

C

I would like to conduct my own independent ancillary study that will include participants involved in an existing Consortium study

Complete an Independent Ancillary Study Idea Form and submit it to the Coordinating Center (ffb@jaeb.org)

 

Yes, Executive Committee

6.1 New Studies


Manuscript Ideas 

 

Frequently Asked Questions

First Step

Committee Approval Required?

Governance Document Section

A

I have an idea for a manuscript or presentation, and I would like to scientifically collaborate with the Consortium on this publication. 

Complete an Analysis Idea Form and submit it to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee

4.1 Editorial Policy

 

Requests to use information that does not require study data

 

Frequently Asked Questions

First Step

Committee Approval Required?

Governance Document Section

A

I would like to present or publish general information about the Consortium and will include no study data

Contact the Coordinating Center (ffb@jaeb.org)

No, but the Coordinating Center should be notified 

5.1.3.4.1 General Consortium Information

B

I would like to use data that I have collected on my own patients who are participating in a Consortium study as part of an independent ancillary study. No Consortium data will be used.

Contact the Coordinating Center (ffb@jaeb.org)

No, but the Coordinating Center should be notified, and a disclaimer must be added

5.1.3.4.2 Independent Ancillary Study Data

 

Requests to use study data from a public dataset

 

C

I would like to publish or present Consortium data that is publicly available.

Visit the Study Info/Datasets tab to download the public dataset. Notify the Coordinating Center (ffb@jaeb.org) about your presentation or publication.

No, but the Coordinating Center should be notified, and a disclaimer must be added

 5.1.3.2 Requests to Use Study Data from a Public Dataset

 

Requests to use or access study data before it is publicly available   

 

D

I would like access to either aggregate or individual data, in pursuit of a scientific collaboration with the Consortium on a publication or presentation or other analysis idea.

Complete an Analysis Idea Form and submit it to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee

5.1.3.3.1 Academic Researchers Seeking Data Access (Aggregate or Individual Observations) - with Scientific Collaboration

E

I would like access to tabulated or summary data, without scientific collaboration with the Consortium

Complete a Summary Data Acquisition Request Form and submit it to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee*, and a disclaimer must be added

5.1.3.3.2 Any Request for Aggregate Data – without Scientific Collaboration

F

I would like to publish or present Consortium data that I already have access to, without scientific collaboration with the Consortium.

Complete a Data Use Request Form and submit it to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee, and a disclaimer must be added

5.1.3.3.3 Academic Researchers Seeking to Use Their Own Study Data– without Scientific Collaboration

G

Can companies or researchers request access to de-identified, participant-level study data without scientific collaboration with the FFB Consortium? 

Yes, by submitting requests in writing to the Coordinating Center (ffb@jaeb.org). Please complete the Individual Observations Dataset Acquisition Request Form. Note that additional provisions apply; refer to the Governance Document for more information.

Yes, Executive Committee, and a disclaimer must be added

5.1.3.3.4 Any Request for Data Access to Individual Observations – without Scientific Collaboration

 * If the origin of this request is a company, the request will also be routed to FFB Leadership to determine if it may be related to existing or possible future industry collaboration.