Survey-based Natural History Study for Men and Women with AMN

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I received the following email from ULF inviting to participate in a survey-based natural history study for men and women with AMN. Please share and participate too.

Approximately 40-45 % of males and 50-65% of female carriers with X-linked adrenoleukodystrophy develop the adult-onset form called adrenomyeloneuropathy (AMN). Symptoms result from a combination of involvement of the spinal cord (myelopathy) and nerves (peripheral neuropathy) as well as the endocrine system (adrenal insufficiency). Although the literature suggests that men are affected earlier and more severely than women, the natural history of specific symptoms, from the perspective of the individual with AMN, and the effectiveness of their treatment has not been well described.

Specific Aims of this Study

1. To delineate in detail the natural history of symptoms of AMN in men and women

2. To explore the psychological, social and quality of life implications of impairment related to symptoms of AMN

3. To apply the knowledge gained from this study to improving clinical protocols and multidisciplinary care for men and women with AMN

All responses are anonymous and investigators will not be able to separate your answers from those of other individuals with AMN completing the survey. The survey should take approximately 10-15 minutes to complete.

To complete the survey, copy and paste the entire link below into your browser:

src.co1.qualtrics.com/jfe/f...

If you have family members or friends with AMN, please forward this email to them so that they can complete the survey if they are interested. The study will be open for 3 months and the study link will close on October 30, 2019. Please complete the survey only once per person. Thank you for your participation in this study.

Results will be presented at the annual ULF Scientific/ Family meeting. A summary of the results will be published in the ULF newsletter and also submitted to a peer-reviewed, scientific journal for publication.

If you would like to receive the results of this study or further information about AMN, please enter your email address on the next form.

This study is funded by the United Leukodystrophy Foundation.