Clinicians and Diagnostics

Atypical HUS Information & Research

Atypical HUS can be a labor intensive disease for the caregiver, and we all appreciate the extra effort that is given: that extra effort is necessary to obtain a positive outcome. We thank all caregivers for going the extra mile for our children.

The Foundation hopes that we can save some time through these valuable services:

  1. Classifying your category of Atypical HUS by genetic testing.
  2. Giving people access to the latest papers.
  3. Providing a place to refer parents to for answers.

To satisfy #1 above, the Foundation currently works with the University of Iowa to offer genetic testing. Simply follow these instructions:

Visit the University of Iowa's website at http://www.medicine.uiowa.edu/morl/. There is a link under "Kidney Disease" for a Testing Requisition Form as well as instructions for Sending a Sample. We ask for 8-10 cc blood be drawn into a lavender top tube and sent room temperature overnight. On the requisition form, there is a place to indicate where the results should be sent as well as a place for billing information. The University does NOT bill the Insurance company directly. Instead, the Medical Facility must bill the insurance company. The Foundation does have a mechanism in place for addressing a hardship case to cover testing costs. Please email Bill Biermann, Foundation Director, at BBiermann@Premier-ks.com for details.

Information About Atypical HUS in Children

Also, note, the University of Iowa does not cover the cost of phlebotomy or shipping. The website also has details about the screening techniques as well as the approximate turn around times. If possible, please send an email to alert me that a sample is on its way. For persons with aHUS, we perform screening of the Complement Factor H, Factor I, Factor B and MCP genes. This testing is performed in our clinical diagnostics laboratory which is CLIA approved. We also have a research mission in which we are performing candidate gene studies and functional studies to try to determine additional genetic components of aHUS. We are hopeful that persons who send their samples for clinical screening will also be interested in joining these studies. For patients to join, the family needs to contact Dr. Richard Smith, the Director of the MORL, to obtain the consent form. The consent is then returned to us giving us permission to use the DNA that is remaining from the clinical studies for the continued research.