Patient Registries & DNA Data Banks

NEPTUNE Patient Registry

The Nephrotic Syndrome Study Network (“NEPTUNE”) is an integrated group of academic medical centers, patient support 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

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 and Bio Banks

Scottish Renal Registry is a national registry of patients with renal failure and other renal disorders in Scotland.
http://www.srr.scot.nhs.uk/

Cancer registries are important in translational research because it is relevant to personalized medicine. International Association of Cancer Registries publishes links to regional registries in Africa, The Americas, Asia, Europe and Oceania.
http://www.iacr.com.fr/

United Kingdom has 12 population-based cancer registries:
http://www.thames-cancer-reg.org.uk/links/index.htm

University of Miami presents the Florida Cancer Data System, which is a statewide population-based cancer registry:
http://fcds.med.miami.edu/

The Cancer Genome Atlas (TCGA) data portal provides a platform for researchers to search, download, and analyze data sets generated by TCGA, which includes clinical information associated with cancer tumors and human subjects, genomic characterization, and high-throughput sequencing analysis of the tumor genomes.
http://cancergenome.nih.gov/dataportal/data/about/

Howard University’s DNA Databank studies disease risks among individuals of African descent.
http://www.howard.edu/newsroom/capstone/2003/June/news2.htm
http://www.genomecenter.howard.edu/TGRIAD.htm

Swedish National Biobank Program is intended as an information resource on biobanks in Sweden, where knowledge about the Swedish biobanking system is mediated and the progress of the National Biobanking Program is presented.
http://www.biobanks.se/

The Saudi Bio-Banking Study is designed as a longitudinal investigation of constitutional and environmental factors that influence the development of some chronic diseases in men and women who are free of these conditions at the outset.
http://www.kaimrc.med.sa/Projects/SaudiBiobank/tabid/165/Default.aspx

Genetic Alliance BioBank provides registry and biorepository solutions for nonprofits to catalyze research for treatments:
http://www.biobank.org/english/view.asp?x=1