X-Linked Carrier Survey is now open
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The Hyper IgM Foundation and the Wiskott-Aldrich Foundation’s first-ever international
X-Linked Carrier Surveys are now available! We are excited to launch this survey project in collaboration with the Primary Immune Deficiency Treatment Consortium (PIDTC) and the Immune Deficiency Foundation (IDF).
Dear ESID Friends and Colleagues,
The Hyper IgM Foundation and WAS Foundation's X-Linked Carrier Survey is now open! Please help distribute this survey to your relevant patients' families. For more information, please read the description below.
The Hyper IgM Foundation and the Wiskott-Aldrich Foundation’s first-ever international
X-Linked Carrier Surveys are now available! We are excited to launch this survey project in collaboration with the Primary Immune Deficiency Treatment Consortium (PIDTC) and the Immune Deficiency Foundation (IDF). We hope you will take a few moments to complete the survey at the following link:
Study Title: A study assessing the physical health and psychosocial well-being of female carriers of Wiskott
Aldrich syndrome (WAS) and X Linked Hyper IgM Syndrome (X-HIGM)
Developed with immunologists who are experts in primary immunodeficiency diseases, including Wiskott-Aldrich syndrome (WAS) and X Linked Hyper IgM Syndrome (X-HIGM), this upcoming survey aims to learn more about the reported health outcomes of Carriers of WAS and X-HIGM and how this affects individuals’ lives, including diagnosis, along with carries’ overall well-being and quality of life.
Carriers of X-HIGM and WAS are very rare and have never been part of a detailed international exploratory survey before. Therefore, participating is particularly important for all families affected by Hyper IgM and Wiskott-Aldrich syndromes as the survey results will help increase what is currently known about carriers of X-HIGM and WAS.
If you have any questions about this survey project, please email us at akiva or or
Thank you for your help on this important project.
Sincerely,
Akiva Zablocki
President
Hyper IgM Foundation
Sumathi Iyengar, M.D.
Co-Founder and Executive Director
Wiskott-Aldrich Foundation
Chris Scalchunes
Vice President, Research
Immune Deficiency Foundation
Important note: ESID is pleased to promote this survey on behalf of HyperIGM with the disclaimer that any and all privacy considerations are the responsibility of HyperIGM and any individuals who choose to participate.