Niemann-Pick Diseases Clinical Trial
Official title:
Understanding Health Insurance Literacy and Challenges in Accessing Health Services in Niemann-Pick Disease Through the Eyes of Patients and Families
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 and medications for patients.
The outcome of this research will be used to inform various other workstreams as NNPDF works
to assist families.
The core research objectives are to understand the following from Niemann-Pick patients and
their families in the US
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 and medications for patients.
The outcome of this research will be used to inform various other workstreams as NNPDF works
to assist families.
The core research objectives are to understand the following from Niemann-Pick patients and
their families in the US;
- Level of health insurance literacy through assessment of health insurance terminology,
and self-reported insights regarding information seeking, document literacy and
cognitive skills
- If they have healthcare insurance, and if not, why not
- Types (including name) of insurance by which Niemann-Pick families are covered
- Information regarding Medicaid Waivers
- Attributes of insurance plans including, but not limited to;
- Deductible amounts for individual and family
- Out of pocket maximums for individual and family
- Insurance premiums
- Associated Health Savings Accounts
- Associated Cost Sharing requirements
- Services, drugs and assistive devices covered
- What the perceived out-of-pocket costs are for Niemann-Pick families (annually)
- When out-of-pocket maximums are perceived to be met for Niemann-Pick families
- Patient and HCP experience in terms of challenges with accessing desired care and
coverage
- Where are families experiencing challenges with accessing desired care and
coverage? (drugs, assistive devices, services) Is it different for the different
phenotypes of the disease?
- What is the challenge? (financial, time, stress, others)
- What is the life impact of that challenge? (work and educational impact, lack or
delay of treatment, others)
;
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