Stanford Medicine Survey for X-ALD Caregivers (due by Feb 28, 2020)

Do you care for a child who had a positive newborn screen for X-linked adrenoleukodystrophy (X-ALD)?

If so, please consider participating in a one-time online survey.

The goal of the study is to help healthcare professionals better understand the quality of life for caregivers of children with a positive X-ALD newborn screen. In the future we hope to use this information to better meet caregivers needs. For additional information and to access the free online survey , please visit https://tinyurl.com/y6jx7ht7

The online survey will be available until February 28, 2020. Questions? Please email the study director, Kayla Muirhead, B.S., at kaylajm@stanford.edu. Participant's rights questions, contact 1-866-680-2906.

X-linked Adrenoleukodystrophy (X-ALD) caregiver study seeking participants!

The study consists of a one- time online survey for caregivers of children who screen positive for X-ALD on newborn screening. The questions in the survey ask about basic demographic information and caregiver quality of life. It is estimated to take about 10-20 minutes to complete.

What are the goals of the study?

• Measure quality of life for caregivers.

• Suggest factors that influence caregiver quality of life.

• Use the information from this study to help providers better care for families with X-ALD.

What can participants of the X-ALD caregiver study expect?

Caregivers will be asked to:

1. Provide their child’s newborn screening results to study personnel

2. Answer a series of questions on the 10-20 minute one-time online survey that measure quality of life and give providers additional background information

Why participate in the X-ALD caregiver study?

This information will help doctors and healthcare providers care for affected individuals and their families and will be used to inform ways to improve overall quality of life.

There will be no cost to families associated with participating in this study. If you provide your contact information, you will be entered into a raffle to be conducted on March 2, 2020 (3 days after the survey is closed) for a $50 Amazon gift card. The drawing will be conducted by Kayla Muirhead in Palo Alto, California. Participation in the study is not required in order to participate in the raffle. You can enter the raffle if you do not start or complete the study task. The chance of winning a prize is approximately 1 in 50. The winner will be notified immediately by email and provided with information on how to receive the prize.

Who can participate in the X-ALD caregiver study?

Any caregiver who has a child with a confirmed diagnosis of X-ALD found on newborn screening in the states of California or New York.

Interested in participating in the study?

Access the one-time online survey at https://tinyurl.com/y6jx7ht7 (survey available until February 28, 2020).

The Principal Investigator of the study is Kayla Muirhead, B.S. To learn more about the study or for inquiries, please contact Kayla Muirhead at kaylajm@stanford.edu. Participant's rights questions, contact 1-866-680-2906.

*If you provide your contact information, you will be entered into a raffle to be conducted on March 2, 2020 (3 days after the survey is closed) for a $50 Amazon gift card. The drawing will be conducted by Kayla Muirhead in Palo Alto, California. Participation in the study is not required in order to participate in the raffle. You can enter the raffle if you do not start or complete the study task. The chance of winning a prize is approximately 1 in 50. The winner will be notified immediately by email and provided with information on how to receive the prize.