NSF Registry

The NFS Registry's Origin and Goal

The NSF Registry is a project formed by Dr. Shawn Cowper to gather and organize information concerning NSF from patients worldwide. The goal of the NSF Registry is to identify factors that may relate to or cause NSF. Currently the NSF Registry has collected medical data, treatment methods and results of several hundred NSF patients in order to evaluate the current NSF treatment options and hopefully find new and even more effective NSF treatment medications, therapies and strategies in the future.

The NSF Registry - Nephrogenic Systemic Fibrosis Information and Data Collection

According to the NSF Registry at Yale University (New Haven, CT), the Registry maintains records on over 215 patients with NSF. Of these 215 NSF patients, more than 95% of all NSF patients surveyed have been exposed to a gadolinium within 2–3 months prior to the onset of symptoms of NSF with a majority of those on dialysis. Further, a number of patients with impaired renal function have been reported to the NSF registry.

Contact Information for the NSF Registry

Contacting the NSF Registry by e-mail is the preferred method at: registermc@juno.com

Telephone: (203) 785-3524
Fax: (203) 785-6869

Per the instructions on their website, patients should not send any medical information, tissue samples or slides to the NSF Registry unless directed to do so by Dr. Cowper or Carol Hribko.

Mailing Address: (to send microscope slides)

NSF Testing

If you would like more information about being tested for NSF and the current methods that are used to evaluate a patient for NSF or NFD, then call us at 1-800-883-9858. Note, we are a law firm in Houston, Texas and can help provide information about NSF testing, punch biopsies and other currently methods for diagnosing NSF. We do not actually perform any medical procedures, but can assist in providing the current accepted protocol used by Physicians throughout the United States.

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Legal Options for NSF Patients

If you or a loved one had a MRI or a MRA, and a contrast dye or agent was used to enhance the MRI image, and you or a loved developed NFS/NFD, kidney failure or renal failure, then you may be eligible to collect money damages for your injuries and damages. Please fill out our Free Case Evaluation Form to better help us assist you, or call us Toll Free at 1-800-883-9858.

NSF – What is it?

Nephrogenic Systemic Fibrosis (NSF) is a rare and serious disease that involves fibrosis of joints, eyes, skin and internal organs. The cause of Nephrogenic Systemic Fibrosis (NSF) is not fully understood by the medical community, but it definitely appears to be associated with exposure to gadolinium which is used as a contrast dye substance for MRIs and MRAs. Gadolinium is a silvery white, malleable and ductile rare earth metal with a metallic luster used as a component of MRI contrast agents to help enhance images in medical magnetic resonance imaging (MRI).

News as of May 10, 2008

Side Effects of the MRI Contrast Gadolinium

NSF Lawsuits

FDA - Public Health Advisory Concerning Gadolinium MRI Contrast Agents

FDA Reports NSF Caused by Gadolinium Contrast Agents

FDA MRI Report-Gadolinium Nephrogenic Systemic Fibrosis(NSF)

Patients with Nephrogenic Systemic Fibrosis (NSF) or Nephrogenic Fibrosing Dermopathy (NFD) may develop large areas or patches of hardened skin or thickened skin with fibrotic nodules and plaques. These areas of thick skin and flexion contractures can severly limit a patient's range of motion. Nephrogenic Systemic Fibrosis (NSF) resembles scleromyxedema at the histologic (microscopic) level; it shows a proliferation of dermal fibroblasts and dendritic cells, thickened collagen bundles, increased elastic fibers, and deposits of mucin. (Also see Nephrogenic Systemic Fibrosis (NSF) Symptoms for more information.

NSF and NFD Information

FDA Requests Boxed Warning for Contrast Agents Used to Improve MRI Images

The U.S. Food and Drug Administration (FDA) has asked manufacturers to include a new boxed warning on the product labeling of all gadolinium-based contrast agents which are used to enhance the quality of magnetic resonance imaging (MRI).

"FDA has been carefully monitoring potential safety signals related to these contrast agents after receiving reports about the risk of this potentially life-threatening disease," said Steven Galson, M.D., M.P.H., director of FDA's Center for Drug Evaluation and Research. "This latest action demonstrates FDA's continuing vigilance about ensuring the safety of drug products once they enter the marketplace."

Patients with NSF develop thickening of the skin and connective tissues that inhibits their ability to move and may result in broken bones. Other organs are at risk of thickening as well. The cause of NSF is not known and there is no consistently effective treatment of this condition.

FDA first notified health care professionals and the public about the gadolinium-related risks for NSF in June 2006.

Gadolinium-based contrast agents are commonly used to improve the visibility of internal structures when patients undergo an MRI. Five gadolinium-based contrast agents have been approved for use in the United States:

Magnevist (gadopentetate dimeglumine)
Ominiscan (gadodiamide)
OptiMARK (gadoversetamide)
MultiHance (gadobenate dimeglumine)
and Prohance (gadoteridol)

NSF also has developed after the sequential administration of Omniscan and MultiHance and Omniscan and ProHance. Because reports incompletely describe exposure to gadolinium-based contrast agents, it is not possible to know if the extent of risks for developing NSF is the same for all agents. Patients should be screened for kidney problems prior to receiving one of these imaging agents. The recommended dose should not be exceeded and enough time should elapse to ensure that a dose has been eliminated from the body before the agent is used again.

Gadolinium Toxicity Lawsuit - Free Case Evaluation

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NSF Information & Links

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Gadolinium Contrast Dyes:

Omniscan
(Gadodiamide)
Manufacturer: GE Healthcare

OptiMARK
(Gadoversetamide Injection)
Manufacturer: Mallinckrodt
Manufacturer: Tyco Healthcare

Magnevist
(Gadopentetate Dimeglumine)
Manufacturer: Bayer HealthCare
Manufacturer: Schering AG
Manufacturer: Berlex

ProHance
(Gadoteridol Injection)
Manufacturer: Bracco Diagnostics

MultiHance
(Gadobenate Dimeglumine)
Manufacturer: Bracco Diagnostics

NFD and NSF Symptoms:

• Skin Swelling
• Skin Hardening
• Skin Tightening
• Orange Peel Textured Skin
• Reddened Skin
• Darkened Skin Patches
• Burning Skin
• Itchy Skin
• Yellow Raised Spots on Eyes
• Bone Problems
• Joint Problems
• Muscle Problems
• Stiff Joints
• Problems Moving Arms
• Problems Moving Hands
• Problems Moving Legs
• Problems Moving Feet
• Problems Straightening Arms
• Problems Straightening Hands
• Problems Straightening Legs
• Problems Straightening Feet
• Deep Pain in Hip Bones
• Deep Pain in Ribs
• Muscle Weakness

High Risk Patients Have:

• Kidney Problems
• Kidney Insufficiency
• Kidney Failure
• Renal Failure
• Had Liver Transplantation
• Chronic Liver Disease