The Dense Deposit Disease / Membranoproliferative Glomerulonephritis Type II Collaboratory – A Virtual Center of Excellence

Purpose

The Dense Deposit Disease/Membranoproliferative Glomerulonephritis Type II (DDD/MPGNII) Collaboratory is a virtual center of excellence focused on DDD/MPGNII.  As such, the DDD/MPGNII Collaboratory serves as a paradigm for the coordinated advancement of knowledge on rare diseases.

Objective

The DDD/MPGNII Collaboratory will pursue research initiatives that in the short term are of high clinical relevance.  These initiatives will be selected because of their likelihood to impact patient care and to translate easily from the laboratory setting to the clinical arena.  The ultimate goal of the DDD/MPGNII Collaboratory is to develop a treatment/cure for DDD/MPGNII.

Background

• In the United States, advocates of the National Organization for Rare Disorders (NORD) estimate that ~25,000,000 Americans are victims of rare disorders. 
• As defined by NORD, a rare or "orphan" disease affects fewer than 200,000 people in the United States.
• There are more than 6,000 disorders that fit this definition and taken together, these diseases affect 1 in every 10 individuals in this country.
• Autoimmune diseases are typical examples of rare disorders.
• Although individually rare, the more than 80 autoimmune diseases represent the third most prevalent category of disease in the United States after heart disease and cancer.
• The visibility of autoimmune diseases within the research community is well below that of heart disease and cancer. 
• NIH funding for autoimmune disease research is but a small fraction of that allocated for heart disease and cancer. 
• There are few Centers of Excellence devoted to the study of rare autoimmune diseases. 
• There are many investigators throughout the world with expertise in areas germane to these diseases. 
• With collaborative effort, these researchers could advance our understanding of rare diseases, making it possible to develop translational research strategies that would lead to therapies to prevent and treat these diseases. 

Proposal 

Rather than creating physical centers of excellence to study rare diseases, a cost-prohibitive proposition given the magnitude of the problem and the very limited resources of KIDNEEDS, KIDNEEDS proposes to achieve the objective defined above by creating a virtual center of excellence to study Dense Deposit Disease/Membranoproliferative Glomerulonephritis Type II.  

The DDD/MPGNII Collaboratory will function as a Virtual Center of Excellence linking research laboratories in different countries on an interactive basis using video-teleconferencing and state-of-the-art software.  Scientists in participating laboratories will be funded through KIDNEEDS. 

All participating scientists will collaborate in the common goal of developing therapies to prevent the progression and recurrence of Dense Deposit Disease/Membranoproliferative Glomerulonephritis Type II, although each laboratory may pursue a unique line of investigation.  Areas of research difficulty will be discussed periodically amongst senior investigators to resolve experimental issues as expeditiously as possible.  Every 18-24 months, senior investigators are expected to attend a 1-2 days Dense Deposit Disease/Membranoproliferative Glomerulonephritis Type II Focus Group meeting. 

What is a collaboratory?

• Before the explosion of networking technologies, collaboration occurred primarily between individuals in the same institution or in institutions in close physical proximity.
• Computer-based information systems restrict feedback and are not ‘rich’ when compared to face-to-face meetings. 
• Media richness can be enhanced by increasing the different data-sets that are used for interaction. 
• A media-rich system supports textual material, video imaging and voice in exceptionally high quality in real-time. 
• A meeting between individuals linked by a media-rich system is virtually indistinguishable from a meeting held between the same persons in the same conference room.
• A collaboratory is a media-rich system that links individuals with common interests, allowing them to efficiently exchange issues, ideas and knowledge.

What will the DDD/MPGNII Collaboratory provide?

• The DDD/MPGNII Collaboratory will promote meaningful interactions between scientists funded through KIDNEEDS.
• It will provide a forum for scientists and their laboratories to debate issues and problems of importance and interest, to gain new insights relating to research, and to maintain focus on research outcomes as they relate to DDD/MPGNII. 
• The DDD/MPGNII Collaboratory will provide scientists and their laboratories with
• access relevant reference information;
• archived interactions for future review;
• a forum to discuss issues, problems and ideas

How will the DDD/MPGNII Collaboratory operate?

• The DDD/MPGNII Collaboratory will link Kidneeds-funded PIs on an interactive basis using state-of-the-art software. 
• All scientists must collaborate in a common goal to develop therapies to prevent the progression and recurrence of DDD/MPGNII, although each laboratory is encouraged to pursue a unique line of investigation. 
• The DDD/MPGNII Collaboratory will hold real-time lab meetings for scientists funded by Kidneeds.   
• At these lab meetings, on-going research will be discussed to advance research goals as expeditiously as possible. 
• Every 12-18 months, scientists will attend a Dense Deposit Disease/Membranoproliferative Glomerulonephritis Type II Focus Group meeting. 

Who can be a member of the DDD/MPGNII Collaboratory ?

Membership in the DDD/MPGNII Collaboratory is open to all investigators interested in studying DDD/MPGNII. 

What funding options are open to scientists?

Scientists can obtain funding through KIDNEEDS.  To obtain this funding, a research proposal must be submitted (see Grant Applications).  These proposals are reviewed by the Scientific Advisory Board of KIDNEEDS and ranked in order of merit.  Submission of a research proposal is not a guarantee of funding.  Funding decisions are made by the Board of Directors of KIDNEEDS based on evaluations provided by the Scientific Advisory Board.  No persons serve on both Boards.   

Continued Support

To obtain continued support, scientists must attend the Dense Deposit Disease/Membranoproliferative Glomerulonephritis Type II Focus Group meeting and demonstrate significant progress over the granting period. In addition, scientists must describe proposed lines of investigation that will be completed over the next granting period. A written proposal describing the proposed lines of investigation should be submitted at the Dense Deposit Disease/Membranoproliferative Glomerulonephritis Type II Focus Group meeting.  Continuing proposals, like new proposals, compete for funds available through KIDNEEDS.

Withdrawal of Support

A grant may be revoked or terminated by the Board of Directors of KIDNEEDS at any time within the project period if it is determined that the scientist or the Grantee Institution has failed in a material respect to comply with the terms and conditions of the grant.

How will discoveries and patents be recognized?

Discoveries and patents remain the ownership of the discovering laboratory.

How will authorship be determined on papers reporting DDD/MPGNII Collaboratory research? 

First, second and senior author positions will belong to the primary laboratory.  If persons in other laboratories have made meaningful contributions to the research paper by contributing to research design, data analysis, and preparation/revision of the manuscript, these persons shall be included as co-authors.