Quality of Life Survey for WAS patients and Families.
Dear families and friends,
The Wiskott-Aldrich Foundation along with the Primary Immune Deficiency Treatment Consortium and the
Immune Deficiency Foundation are conducting a survey about the quality of life of patients with WAS and the impact WAS has on the family. We are collaborating internationally with the Israeli WAS Association and Dr. Michael Albert from Germany.
This is the first study of it's kind and we hope that it can give us important information regarding efficacy of the various treatments, how patients are faring years after treatment and the impact on the family. This information will help researchers better understand WAS which can lead to improved treatment for families facing WAS.
The survey should take 20-30 minutes to complete. We have some questions for children who are over the age of 5 years. So, please have them with you when you are ready to take the survey. Their part of the survey should take 5-10 minutes. You can stop and re-start at any time and the information will be saved.
You may receive a request to complete the survey from IDF, from your/your child's physician or from one of our collaborators. They are identical surveys. Please take the survey just once.
For more information on the survey and to take the survey, please follow the links below:
Parents of adult children, please encourage your sons to participate in the study. These young adults are a very important part of our study and it's important to hear what they have to say. Feel free to pass on the email to WAS families you know.
Thank you for your support.
Mort Cowan, M.D.
Christina Mangurian, M.D.
Sumathi Iyengar, M.D.