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Value-Added Activities of a New Medication in Rare Disease

1.Please indicate your specialization

2.How long have you experienced in treating patients with rare diseases?

Not relevant to my daily practice

Less than 5 years

between 5-10 years

10 years and more

3.Please indicate which of the following attributes/ activities are the most important/useful/beneficial for you regarding a medication/medicinal product for the treatment of patients with a rare disease

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

To receive comprehensive knowledge on product characteristics (structure, function and biological activities)

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

To receive clinical evidence/data from pivotal phase II/III trial (efficacy, safety), which is published in peer-reviewed journal

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

To realize that the company understands the target patients’ needs and provides with data from patients reported outcomes

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

To receive evidence/data from Health Economic Outcome Research about product effectiveness (direct or indirect comparison) versus available treatment options (if any)

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

Access or availability of early access provision for that product (prior to marketing authorization) and registries (pre- and post-approval to monitor the patients)

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

That the pharmaceutical company is demonstrating scientific engagements with respective medical societies to improve research and education in that respective therapeutic area

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

That knowledge from Advisory Boards with experts in the fields has been collected and implemented into product strategy and product lifecycle

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

That the pharmaceutical company demonstrates their commitment to patients and caregivers, with additional services (not related to product)

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

That multiple communication channels are used to reach out directly to end-consumers/patients (TV, press-newspapers, e-commerce, twitter, facebook, other on-line/social media, etc) to inform about that product and educate about disease.

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

The opportunity to receive information about product at company promotional symposia and/or commercial booth at congresses

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

To receive education about the disease and therapeutic area, supported by company via grant or travel to congress

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

That the pharmaceutical company is engaged in co-operation with patient and care giver groups

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

Face-to-face meetings, hospital visits of sales representatives from the pharmaceutical company

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

Face-to-face meetings, hospital visits of Medical-Science-Liaison- representatives from the pharmaceutical company

1-not important

2-might be important

3-important

4-very important

5-highly critical/extremely important

4.How important is it for you that a pharmaceutical company focuses on providing with additional materials and/or services to the patients suffering from rare disease?

Not important, because e.g. my decision to use a medication is based on available clinical evidence, published literature and scientific outcome and not on the services for patients

Some materials and services can be of support for some patients

Important, due to the nature of rare diseases the individual link between patient and treating physician is very strong and I generally appreciate any support for patients to make their live easier support for patients to make their live easier

I do not know/ it is unclear

5.What do you believe is the most important support you need from pharmaceutical company now and in the future to successfully treat your patients with RD?

a. What do you believe is the most important support you need from pharmaceutical company now and in the future to successfully treat your patients with RD?

6.How important will be social media for patients with rare diseases and their treatment in the future?

Not important

I am not sure how the development will be

It can be useful for some patients and physicians

Important

Very important

Current Progress,

0 of 6 answered

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