Your participation contributes essential data that informs scientific research, guides the development of treatments, enhances support services, and strengthens advocacy efforts across the community.
Survey for individuals and families affected by Acid Sphingomyelinase Deficiency (ASMD) to explore what happened before and around the time of diagnosis. The survey will help researchers better understand early signs and symptoms, experiences seeking medical care, challenges that may delay diagnosis, and what ultimately led to a diagnosis.
Your experience can help improve understanding of the ASMD diagnostic journey and support future efforts to identify ASMD earlier.
Questions?
Dr. David McMinn
[email protected]
The National Institutes of Health (NIH) is looking for those who care for those with NPC to be in a sub-study looking at gastrostomy tubes (g-tube).
This study will look at g-tubes and what shaped the decision for caregivers to either have one placed in an individual who has NPC. This research study will be remote, with no need to come to the NIH.
Remote
National Institutes of Health (NIH), Clinical Center
9000 Rockville Pike, Bldg. 10, Bethesda, MD
If you are interested in finding out more about this study, please visit t.ly/knk8E to provide contact information.
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