A natural history study tracks the course of a disease over time. The goal of this type of study is to collect information about disease progression that will inform research and the development of new medicines and treatments.
There is a multinational natural history study of C3G in progress called, "Natural History Study of C3 Glomerulopathy (C3G): Discovery of Histological Predictors of Outcome." It is being led by Imperial College London. The study is expected to be 3 years in length and will involve 400 participants, with results to be shared publicly.
Achillion Pharmaceuticals, Inc. is a sponsor of this study.
For more information, check out the study website.
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There are times when patients, caregivers, and doctors who are experts in a certain disease formally come together to discuss what it is like to live with the disorder. These meetings are called Patient-Focused Drug Development (PFDD) meetings. They inform companies, organizations, and regulatory authorities about the patient perspective on a disease and its treatments, and can help support making new medicines available to patients.
In August 2017, a PFDD in C3G was led by the National Kidney Foundation with participation from the United States Food and Drug Administration (FDA). Learn more about the meeting and patient perspectives shared there here. This meeting was sponsored by Achillion Pharmaceuticals, Inc.
Read the "Voice of the Patient" report summarizing the meeting.
Watch the video.
Clinical trials are research studies to better understand and treat disease. There are some investigational treatments for C3G that are being studied now.
Consider searching clinicaltrials.gov for more information (enter C3G in the search bar) or get more details about specific C3G clinical trials, where they are occurring, and contact information.
Be sure to check these links often, as new studies may become available.
Here is a list of helpful organizations and links to their websites:
National Kidney Foundation
National Organization for Rare Disorders (NORD)
Kidney Foundation of Canada
MPGN/DDD Support Group
DDD/C3G Renal Support Group UK
Progetto DDD Onlus
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Learn more about the complement system, the kidney, and signs and symptoms to gain a better understanding.
Learn more about managing C3G now and in the future.
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