Participants Needed: Study on Living with PANDAS (Interviews)

[Sheila]

We have been requested to share information about a research study (University of Detroit Mercy) related to the experience of caring for a child with PANDAS. A PANDAS parent is overseeing the conducting of confidential interviews.

 

Wanted: Research participants

 

When: Immediately

 

Purpose: to answer a short questionnaire over the phone, the phone call will be recorded, questions pertain to the experience of caring for a child with PANDAS. Children or teens who have PANDAS may also respond to the questions with parental permission. This study is being performed by the University of Detroit Mercy

 

Objectives of Proposed Project:

The objective of this study is to understand the experiences of living with Pediatric Autoimmune Neuropsychiatric Disorders Associate with Streptococcal Infections (PANDAS) from the perspective of the children living with the disorder and their families.

 

Brief Description of Research Plan:

Families and their children with PANDAS will be interviewed regarding their experiences. Structured and unstructured interview questions will be asked. Subjects will be contacted through a spokesperson (Mary Crombez) who is the parent of a PANDAS child and a family organizer for the disorder. Parents, grandparents and children living with the disorder agreeing to participate in the study will participate in at least one interview expected to take about 1 hour. The interviews will be tape recorded, transcribed and verbal transcriptions will be analyzed. Subsequent and follow-up interviews may be conducted to clarify analyzed data or obtain additional information. The results will be written and published in a scholarly journal.

 

For more information or to set up your phone contact day/time please email: Mary Crombez, mmcrombez@gmail.com

 

[Mayzoo]

My daughter was PANDAS, and just was switched to PANS due to very low strep antibodies. Are they only interested in those with traditional PANDAS, or is PANS okay? If PANS is okay, do we have to know the triggers since we have not finished testing yet?

 

Thanks

[LindaMW]

Mayzoo,

 

I already recieved my information to do the interview and I asked the same thing. They are looking for both, whatever your experience has been with Pandas/Pans and the effect on your family.

 

She told me the infectious sources vary widely, any triggers.

 

[Mayzoo]

Thanks Linda . I will try to get in touch with them today.

[nicklemama]

They are looking for both. My son is PANS and we've already done the interview at my home. I know Mary Crombez personally. She lives nearby. She is a member of this forum and occasionally posts. She is professional and caring and will maintain confidentiality.

[Mary M]

My daughter was PANDAS, and just was switched to PANS due to very low strep antibodies. Are they only interested in those with traditional PANDAS, or is PANS okay? If PANS is okay, do we have to know the triggers since we have not finished testing yet?

 

Thanks

PANDAS/PANS/PITAND all accepted in the study. Any known or unknown etiology accepted.

Mary

[Mary M]

Thank you all who have responded to participate. We are working hard to make contact with convenient days/times. We have added more data collectors to help expedite the process.

Mary

[Mary M]

Thanks to everyone who has been interviewed thus far...and, to those who do not have an appointment yet, thank you for waiting patiently. As you know, the more data we have, the better the research so we are grateful to everyone participating and will try to get each and every one who has responded into the calendar.

Mary Crombez