From the Foundation

Study Opportunity for White Sutton Families

UPDATE: This study is no longer accepting applicants.

We have recently been made aware that Dr. Sutton and one of his associates, Dr. Nurit Batzir, are looking for study participants for research into White Sutton Syndrome. They are especially interested in patients who have gastrointestinal and sleep issues. Below we have included the letter with more details. If you would like to contact the doctors about participating in this study, please fill out the form at the bottom of this page to contact them.

Letter to Parents

Dear families, Since the discovery of White-Sutton Syndrome (POGZ-related disorders), over 40 individuals have been reported in publications worldwide, however there is still much to learn about this syndrome and we are hoping that you can help. Some of you have already agreed to participate in this endeavor and have provided medical records. This has allowed us to identify a need for more detailed parent/patient-reported information in various domains, particularly sleep and gastrointestinal issues. If you have already consented to our research, we will be sending out these questionnaires shortly. If you have not consented to our research but are interested in completing the surveys (29 questions + 10-question sleep disordered breathing questionnaire, which together should take approximately 10 minutes to complete) please contact us to learn more about the study and to provide your consent to participate. Also, If you agree to share other information, such as the results of genetic testing, brain MRI and even photos of your child, that would be very helpful but is not required. We would discuss this more if you think you are interested in participating. Please feel free to contact us with any questions or concerns, as well as provide our contact information to any other families of patients with pathogenic variants in POGZ who may be interested in participating in the study. Thank you very much, Dr. Reid Sutton and Dr. Nurit Assia Batzir

10 Responses

  1. Eileen Piller

    Son 61 years old was diagnosed about 6 months ago 2022 after genetic We would very much like to be in the study. I believe John may be one of the oldest to be diagnosed. His life journey would be valuable to the study. Eileen Piller

  2. Oonagh Brault

    Hello I am brand new to this arena. My adopted daughter Jennifer was just diagnosed with white / Sutton syndrome. I would be really interested in her participating in any of these studies. I am her legal guardian and she is 36 years old She also has a biological sister who’s 11 months younger who seems to have the same traits We are looking at contacting her guardian to get her tested. It is taken us over 20 years to get the diagnosis we got yesterday I am so excited to help and research to help Jenny and others like her Please let me know what I can do to help participate in any studies with her. I’m also excited to connect with other parents as well.

  3. Idrees Mohmmad Rather

    Hi – my son is 14 months old and has been diagnosed and I would like to participate. He has sleep pattern issues and also gastrointestinal issues

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