Status:
COMPLETED
Health Insurance Literacy and Challenges in Accessing Health Services in Niemann-Pick
Lead Sponsor:
National Niemann-Pick Disease Foundation
Collaborating Sponsors:
Engage Health Inc.
Icahn School of Medicine at Mount Sinai
Conditions:
Niemann-Pick Diseases
Eligibility:
All Genders
18+ years
Brief Summary
This study is a US based qualitative PRO research study to document the health insurance literacy as well as the patient experience in Niemann-Pick as it relates to accessing desired care, services an...
Detailed Description
This study is a US based qualitative PRO research study to document the health insurance literacy as well as the patient experience in Niemann-Pick as it relates to accessing desired care, services an...
Eligibility Criteria
Inclusion
- Participant must be a person with Niemann-Pick disease who is 18 years or older or The parent/legal guardian of a person with Niemann-Pick disease. Please note: Parents whose child has passed on are able to participate in the RSVP. Parents whose child has passed on in the last two years are also able to participate in the interview. Please note that only one family member will be eligible to complete the RSVP and interview for one family.
- Confirmed diagnosis of Niemann-Pick disease, confirmed by membership in the NNPDF or by provision of a proof of disease form
- Able to read, write and communicate in English
- Able to grant informed consent
- Willing to complete a survey and RSVP, and to participate in a 30-minute telephone interview
- Ability to view or receive a document from the interviewer before or during the interview (web browser, ability to receive a text, fax or document by mail)
Exclusion
- \- Inability to meet any of the above 6 criteria
Key Trial Info
Start Date :
June 15 2020
Trial Type :
OBSERVATIONAL
Allocation :
ACTUAL
End Date :
September 21 2020
Estimated Enrollment :
76 Patients enrolled
Trial Details
Trial ID
NCT04469894
Start Date
June 15 2020
End Date
September 21 2020
Last Update
October 6 2020
Active Locations (1)
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1
Icahn School of Medicine at Mount Sinai
New York, New York, United States, 10029