The Cystinosis Research Network, Inc. (CRN) is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis.The Cystinosis Research Network’s vision is the discovery of improved treatments and ultimately a cure for cystinosis.
Research proposals may be submitted to the Cystinosis Research Network for review and consideration.The Cystinosis Research Network utilizes a Scientific Review Board comprised of leading experts on the disease of cystinosis which reviews grant proposals and submits funding recommendations to the Cystinosis Research Network More specifically, the Scientific Review Board provides independent, objective review and recommendations regarding each research proposal utilizing grant review guidelines established by the Cystinosis Research Network and in accordance with the mission of the organization.
Priority is given to interventional research, both clinical and basic, that will lead to improved treatments for cystinosis.New investigators are particularly encouraged to apply.The Chairperson of the Scientific Review Board summarizes its recommendations and presents them to the Cystinosis Research Network which then votes on each proposed project.
Applicants must submit an electronic copy of each proposal to both:
Christy Greeley, Vice President for Research
Jeff Larimore, President
The Scientific Review Board utilizes a two step-process to make funding recommendations.The first step occurs at the annual Scientific Review Board meeting.Proposals may be submitted to CRN at anytime, however, CRN will issue a formal call for grant proposals prior to the annual meeting for preliminary review.The top rated applicants from the preliminary review meeting may be asked to present their proposals in person before the Scientific Review Board at its annual meeting, to be held in conjunction with the biennial conference.In years when the conference does not take place, the meeting will be held via conference call.After this second step, the Scientific Review Board will again rank the proposals and make its final funding recommendations to the CRN Executive Committee via the Vice President for Research.
The Executive Committee will meet within two weeks following the annual Scientific Review Board meeting and will then vote on the SRB’s recommendations.Funding decisions will be arrived at taking several factors into consideration.In addition to the SRB’s recommendations, these factors may include such issues as the amount of money currently allotted for research funding, internal research topic prioritization, expressed wishes of donors, and efforts to support a wide variety of cystinosis researchers.More than one grant may be funded.A majority vote of the Executive Committee will be required in order to approve funding of any grant proposal.Decisions will be communicated to each applicant within two weeks following this meeting.
An optional, additional SRB meeting may be held at the discretion of the Executive Committee in the event that additional funds become available and outstanding qualified proposals remain unfunded.A call for new proposals may also be made at that time in the event that the amount of new funding available exceeds that required by any outstanding, qualified proposals.Funding recommendations would be arrived at after the optional meeting of the SRB.The Executive Committee would then utilize the same procedure in order to arrive at funding decisions.
Each application must include:
Upon acceptance of research grant funding by the Cystinosis Research Network, the awardee/recipient agrees to the following:
Progress reports will be required from awardees at specified time points.These will include reports at 6 month intervals (i.e. 6 month, 12 month, 18 month, etc.), for the duration of the study, as well as a final report at the conclusion.These progress reports should be an executive overview of the study’s progress against key milestones, including budget and personnel updates.Budget payments will be linked to these reports.
The Cystinosis Research Network biennially sponsors a Scientific Symposium and Family Conference (conducted in sequence).The Principal Investigator (or comparable level delegate) agrees to be available within reasonable limits of time and travel to present the findings of the research sponsored by the Cystinosis Research Network at either or both of these events.Reimbursement will be provided through separate funding for the Principal Investigator or delegate’s expenses in attending these events.
Any publication of research funded by the Cystinosis Research Network must give proper reference to the Cystinosis Research Network.The Principal Investigator must mail a copy of such publications to the Research Committee Chair or Executive Director of the Cystinosis Research Network.
A single score is given to each individual proposal.This score is a numerical indicator of the best estimate of scientific merit.Reviewers use their own standards of excellence to arrive at this estimate of scientific quality and program cohesiveness using the set of adjectival descriptors below.Priority should be given to interventional research, both clinical and basic, that will lead to improved treatments for cystinosis.Only applications with significant and substantial scientific merit are scored.All other applications are “Not Recommended for Further Consideration”.
Each reviewer votes on a scale of 1.0 to 5.0, using increments of 0.1.One (1.0) is the best score and 5.0 is the poorest among rated applications.The priority score of the Scientific Review Board is then calculated by averaging the individual priority scores and multiplying the result by 100.Ratings should be reached and recorded independently.Applications not recommended for further consideration are not rated.
Each reviewer is expected to use his or her personal standards of excellence in arriving at a priority score.Merit assessment includes such factors as how the recommended research would advance knowledge given the state-of-the-art in the disciplines involved; the likelihood of accomplishing this; the technical and scientific competence of the investigators;the degree of institutional support; the adequacy of facilities and resources; and the internal organization, administration, and quality control management.
The following shows the correspondence between numerical scores and adjectival descriptions:
From the Fanconi Anemia Research Fund, Inc. guidelines, adapted from the peer review guidelines used by the National Institutes of Health, effective 1991; updated 5/96
Chairperson, William A. Gahl, M.D., Ph.D.
Clinical Director, National Human Genome Research Institute, Head, Section on Human Biochemical Genetics, Medical Genetics Branch, Head, Intramural Program, Office of Rare Diseases, National Institutes of Health, Bethesda, Maryland
Frederick Kaskel, M.D., Ph.D.
Professor of Pediatrics, Director, Division & Training Program in Pediatric Nephrology Children's Hospital at Montefiore, Albert Einstein College of Medicine of Yeshiva University, New York
Craig B. Langman, M.D.
Issac A. Abt, M.D. Professor of Kidney Diseases, Feinberg School of Medicine, Northwestern University, Head, Kidney Diseases, Children's Memorial Hospital, Chicago, Illinois
Jess G. Thoene, M.D.
Director, Biochemical Genetics Laboratory, Active Professor Emeritus of Pediatrics, University of Michigan
Robert Kleta, MD, PhD, FASN, FACMG
Professor of Nephrology and Physiology, Potter School of Nephrology, University College London, Royal Free Hospital, London, England
Roslyn B. Mannon, MD
Professor of Medicine, Division of Nephrology
Professor of Surgery, Division of Transplantation
Director of Research, Alabama Transplant Center, Birmingham, Alabama
Richard H. Simon, MD
Professor and Associate Chair for Faculty Affairs
Department of Internal Medicine
Pulmonary and Critical Care Division
University of Michigan Medical School
Ann Arbor, Michigan