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 FAQs

 

Frequently Asked Questions

First Step

Committee Approval Required?

Governance Document Section

A

I have an idea for a new FFB Consortium study

Complete this form and submit it to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee

3.6.1 New Protocols

B

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

Complete this form and submit it to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee

3.6.2 Ancillary Studies

C

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

Contact the Coordinating Center (ffb@jaeb.org)

 

Yes, Executive Committee

3.6.2 Ancillary Studies

Data Use FAQs

 

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 intend to include no patient data

Contact the Coordinating Center (ffb@jaeb.org)

Yes, Operations Committee

3.4 Editorial Policy

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 must be notified

3.5.3 Data Sharing Policy

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 must be notified

3.5.3 Data Sharing Policy

D

I would like to publish or present Consortium data that is not yet publicly available, and I would like to scientifically collaborate with the Consortium to do so.

Complete this form and submit to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee

3.4 Editorial Policy

3.5.3 Data Sharing Policy

E

I would like to publish or present Consortium data that is not yet publicly available, and I would like to do so without scientifically collaborating with the Consortium.

Complete this form and submit it to the Coordinating Center (ffb@jaeb.org)

Yes, Executive Committee

3.4 Editorial Policy

3.5.3 Data Sharing Policy