Evidera, a research group working on behalf of Sanofi Genzyme, is conducting a research study to understand the symptoms and impact experienced by carers of those affected by ASMD Niemann-Pick disease types B, or A/B.
The study takes the form of an interview, which will last up to 90 minutes. The interview will be conducted by Evidera and will focus on your experience caring for an individual with ASMD and how it affects your daily life. The interview does not involve the use of any drugs or medical interventions. If you choose to participate, you will be contacted by an Evidera staff member to determine eligibility. If eligible and interested, you will be scheduled for an interview. The answers you provide will be kept strictly confidential and used only for study purposes.
Participation is completely voluntary. Whether you decide to participate or not, your medical care will NOT be affected. You will be free to withdraw from the study at any time.
If you are interested in participating or have any questions, please do not hesitate to contact Evidera at 0-800-029-1830 (for UK-based participants) or email Evidera at ASMDcaregiverstudy.SM@ppdi.com .
You can also contact the Niemann-Pick UK team by telephone 0191 415 0693 or email info@npuk.org if you would like to discuss this study or any aspect of ASMD Niemann-Pick disease.
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