X-linked Hyper IgM Carrier Survey

 

The Hyper IgM Foundation’s first-ever International X-linked Hyper IgM Carrier Survey is here!

 

OVERVIEW

X-Linked Hyper IgM syndrome (X-HIGM) is a rare, primary immune deficiency disorder. It is a life-threatening disorder with varying degrees of severity that can unpredictably change over time. 

Females are the carriers of the defective X-HIGM gene and pass it on to their offspring.  Each boy born to a mother carrying the X-HIGM gene has a fifty percent chance of inheriting the defective gene and having X-HIGM.  Likewise, each girl born to the carrier female has a fifty percent chance of inheriting the defective gene and becoming a carrier herself.  Each girl born to a dad with X-HIGM (including those who have been cured) will be a carrier.

Not much is known about the effects of carrying the mutated X-HIGM gene in carrier females.  There is some concern that female carriers may have repeated infections, low neutrophils, orals ulcers and autoimmune manifestations.  However, there is no data at this time about whether being a carrier affects our health.  This can create stress, anxiety and can lead to unnecessary testing. When carriers are faced with conditions such as low platelets, the lack of information leads to excessive testing and sometimes to misdiagnosis. 

Aside from the possible impact on X-HIGM Carriers, there is the question as to whether a X-HIGM carrier can be a donor to their sibling who has X-HIGM.  It is an important question to answer because a matched sibling offers the best outcomes from a bone marrow transplant.

This is the first large scale study looking at X-HIGM Carriers.  The results from this study can provide important information on the health and well-being of carriers.  It can provide reassurance if it shows that there is no effect on health and can lead to recommendations about how to better care of their health if the study shows that there is a higher risk of any illness. 

How to Participate in the 2020 X-HIGM Carrier Survey

All identified individuals with X-HIGM and their families in our database with valid email addresses will be sent a personal email invitation.  The information about the survey will be posted in our Support Groups and X-HIGM Carriers in the group are invited to participate in the survey.

To make sure we have your current email, please go to this form page (https://forms.gle/k1ixUK1N9TGmzHNYA) we set up to provide updated contact information to receive a link to the survey.

What will the Hyper IgM syndrome Foundation do with the Data?

The survey will be performed electronically utilizing the Qualtrics Survey Software Platform. Security features of this software include enhanced SSL security and HIPAA compliant features.

Survey responses will be collected over secured, encrypted SSL/TLS connections. All other communications with the Qualtrics website are sent over SSL/TLS connections. Secure Sockets Layer (SSL) and Transport Layer Security (TLS) technology to protect communications by using both server authentication and data encryption. This ensures that user data in transit is safe, secure, and available only to intended recipients. 

The data collection is anonymous.  The data from each X-HIGM Carrier is deidentified, and the deidentified information is shared with the researchers who are conducting the survey.    

If You Have Any Questions About the Survey, Please Contact:

Akiva Zablocki, MPH from the Hyper IgM syndrome Foundation Akiva@hyperigm.org.

Thank you for your help on this important project.

 


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