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NEPTUNE and Other Patient Registries

The Nephrotic Syndrome Study Network ("NEPTUNE")* is an integrated group of academic medical centers, patient advocacy organizations and clinical research resources dedicated to advancing the understanding and treatment of Membranous Nephropathy, Minimal Change Disease and Focal and Segmental Glomerulosclerosis (FSGS). These Nephrotic Syndromes occur when there is a malfunction in the kidney's filtering system (glomeruli) causing protein in the blood to leak into the urine (proteinuria). The Halpin Foundation actively supports this study network.

A Contact Registry has been created to inform patients and/or parents of patients of clinical research studies. Joining the contact registry will help researchers identify and recruit patients who are eligible for participation in future research studies.

Click here to join the Contact Registry for Membranous Nephropathy.

Click here to download brochures about MN and to learn how to participate in NEPTUNE research.

Information contained within this registry will be used for recruitment to research studies directed at improving our knowledge and treatment of these rare diseases. The continued efforts of researchers seek to improve the quality of life for all who are suffering from these rare diseases. The work of the researchers cannot occur without the partnership with patients.

Patients who participate in research make it possible for researchers to find new treatments, create new studies, and work for the improvement of all our lives. By joining our registry, patients will be contributing to the research of the Rare Diseases Clinical Research Network sponsored and funded by the National Institutes of Health (NIH).

Other registries:

Adult Acute Liver Failure Study Group (ALFSG)
http://www8.utsouthwestern.edu/utsw/cda/dept25203/files/89624.html

Beta Cell Biology Consortium (BCBC)
http://www.betacell.org/

Central NIDDK Repository for Biosamples and Data
http://www.niddkrepository.org

Clinical Outcomes Research Inititative (CORI)
http://www.cori.org/

Digestive Diseases in the United States: Epidemiology and Impact
http://digestive.niddk.nih.gov/statistics/statistics.htm

Federal Databases for Biomedical and Nutrition Related Research
http://dnrc.nih.gov/highlights/database-page.htm

Globin Gene Server
http://globin.cse.psu.edu/

Hembase
http://hembase.niddk.nih.gov/

Human Biological Data Interchange
http://www.ndriresource.org/Biospecimens_Programs/HBDI/36/

Human Nutrition Research Information Management (HNRIM)
http://hnrim.nih.gov/

Murine Atlas of Genitourinary Development (GUDMAP)
http://www.gudmap.org/

National Digestive Diseases Information Clearinghouse (NDDIC)
http://www.digestive.niddk.nih.gov

National Gene Vector Laboratories (NGVL)
http://www.ngvl.org/

NIDDK Endocrine and Metabolic Diseases Information Service
http://www.endocrine.niddk.nih.gov

Nuclear Receptor Resource Project (NRR)
http://nrr.georgetown.edu/NRR/nrrhome.htm

Pediatric Acute Liver Failure Study Group (PALF)
http://www.palfstudy.org

United States Renal Data System (USRDS)
http://www.usrds.org/

* NEPTUNE is a part of the NIH Rare Diseases Clinical Research Network (RDCRN). Funding and/or programmatic support for this project has been provided by U54 DK083912 from the NIDDK and the NIH Office of Rare Diseases Research (ORDR), the NephCure Foundation, and the University of Michigan. The views expressed in written materials of publications do not necessarily reflect the official policies of the Department of Health and Human Services; nor does mention by trade names, commercial practices, or organizations imply endorsement by the U.S. Government.