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REQUEST FOR COLLABORATION

WITH THE FSGS STUDY


The Focal and Segmental Glomerulosclerosis (FSGS) Clinical Trial, a NIH/NIDDK-sponsored multi-center prospective randomized trial of treatment of steroid resistant focal and segmental glomerulosclerosis, seeks your assistance to identify patients as prospective enrollees in the study. As we as a group are collectively responsible for evaluating a large portion of the kidney biopsies performed in the United States and Canada, we are in a unique position to help in this project.

This study is interested in enrolling patients age 2 to 40 years who have primary FSGS with a minimum urine protein/creatinine ratio of 1.0 g/g and a GFR of 40 ml/min/1.73m2 or greater.

We envision that when a biopsy specimen is read as FSGS and results are discussed with the responsible nephrologist, you inform him/her of the existence of the study. A study coordinator from one of the five FSGS core coordinating centers would contact your office monthly to obtain information on all biopsy specimens diagnosed as FSGS, the date of the biopsy and the name and location of the nephrologist responsible for that patient. It is not necessary to provide the patient name; however, the pathology number should be provided (not a HIPAA violation) to the coordinator who can use that information to help the nephrologists identify potential patients to be entered into the trial. At no time would the study coordinator directly contact potential patients.

We believe that this is the best way to identify prospective enrollees; your cooperation and help would be greatly appreciated.

Should you have any questions, do not hesitate to contact
Aaron Friedman, chair of the steering committee for the FSGS-CT
Tel: 401 444-5648
Email: afriedman@lifespan.org

Thank you in advance for your assistance.

Vivette D'Agati
Charles E. Alpers
Arthur H. Cohen
James M. Pullman
Daniel Savino

 


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