Add New Treatment Center - National Gaucher Foundation

To submit a request to add your Treatment Center to National Gaucher Foundation’s Treatment Center Finder, please fill out the below form.

Submit new information for each field that needs to be updated; there will be the opportunity for general comments before submitting.

New Treatment Center Survey

"*" indicates required fields

Step 1 of 9

11%

Page 1: Your Information

First Name*

Last Name*

Title*

Organization*

Phone Number*

Email Address*

Page 2: Treatment Center

Please fill out all fields; there will be the opportunity for general comments before submitting.

Name of Treatment Center*

Address*

Street Address Address Line 2 City State ZIP Country

Email Address*

Phone Number*

How many Gaucher patients are treated at your facility?*

N/A

0-5

6-15

16-26

26 or more

The majority of Gaucher patients treated at the center are*

Infants

Children

Adolescents

Adults

Geriatrics

Type of treatment center*

Does your treatment center provide:*

In clinic infusion

Home coordinate infusion

Oral substrate inhibition prescription

All of the above

None of the above

Please describe your treatment center's text/exam protocol and how frequently follow up evaluations are conducted.*

Treatment Center Primary Contact

For internal use by National Gaucher Foundation only

Are you the primary contact for this treatment center?*

Yes

Primary Contact Name*

Primary Contact Title*

Primary Contact Phone Number*

Primary Contact Email Address*

Page 3: Patient Services

What is the average patient wait time from arrival to receiving infusion?*

N/A

Less than 15 minutes

16-30 minutes

31-45 minutes

46 minutes or more

Which of the following services do Gaucher patients receive at your treatment center?*

Appointments with a Gaucher specialist

Biweekly infusions

Appointments with a genetic counselor

Appointments with other physicians (for example, orthopedist, hematologist, hepatologist, etc.) as medically necessary

Please check all that apply.

Page 4: Genetic Counseling

Does your treatment center have genetic counselors?*

Yes

How many genetic counselors does your treatment center provide?*

Please provide the genetic counselor’s contact information below.

Genetic Counselor 1

Please provide the genetic counselor’s contact information.

Name*

Please include their full title

Company

Address

Street Address Address Line 2 City State ZIP Country

Which services do your genetic counselors provide?*

Individual/patient counseling

Family counseling

Case management within the treatment center

Please select all that apply

Genetic Counselor 2

Please provide the genetic counselor’s contact information.

Name*

Please include their full title

Company

Address

Street Address Address Line 2 City State ZIP Country

Which services do your genetic counselors provide?*

Individual/patient counseling

Family counseling

Case management within the treatment center

Please select all that apply

Genetic Counselor 3

Please provide the genetic counselor’s contact information.

Name*

Please include their full title

Company

Address

Street Address Address Line 2 City State ZIP Country

Which services do your genetic counselors provide?*

Individual/patient counseling

Family counseling

Case management within the treatment center

Please select all that apply

Page 5: Physicians who treat Gaucher Disease

Name of the physician at your facility who treats Gaucher Disease.*

If there is more than one physician who treats Gaucher Disease, include just one name here. You’ll have the chance to include the others separately.

This physician's primary specialty is:*

How many years has the physician treated Gaucher patients?*

1 – 5 years

6 – 10 years

11 – 15 years

16 – 20 years

More than 21 years

The physician treats the following:*

Infants

Children

Adolescents

Adults

Geriatrics

Please check all that apply

Does the physician participate in the ICGG/Registry?

Yes

Does the physician have an active clinical or lab research interest?

Yes

If yes, please describe.

Is the physician involved with patient advocacy?

Yes

If yes, please describe.

Is the physician's contact information different from your facility's contact information provided earlier?

Yes

Physician's phone number

Physician's email address

Are there other physicians at your treatment center or hospital who treat patients with Gaucher Disease?*

Yes

Page 6: Physicians who treat Gaucher Disease (#2)

Name of the second physician at your facility who treats Gaucher Disease.*

This physician's primary specialty is:*

How many years has the physician treated Gaucher patients?*

1 – 5 years

6 – 10 years

11 – 15 years

16 – 20 years

More than 21 years

The physician treats the following:*

Infants

Children

Adolescents

Adults

Geriatrics

Please check all that apply

Does the physician participate in the ICGG/Registry?

Yes

Does the physician have an active clinical or lab research interest?

Yes

If yes, please describe.

Is the physician involved with patient advocacy?

Yes

If yes, please describe.

Is the physician's contact information different from your facility's contact information provided earlier?

Yes

Physician's phone number

Physician's email address

Are there other physicians at your treatment center or hospital who treat patients with Gaucher Disease?*

Yes

Page 7: Physicians who treat Gaucher Disease (#3)

Name of the third physician at your facility who treats Gaucher Disease.*

This physician's primary specialty is:*

How many years has the physician treated Gaucher patients?*

1 – 5 years

6 – 10 years

11 – 15 years

16 – 20 years

More than 21 years

The physician treats the following:*

Infants

Children

Adolescents

Adults

Geriatrics

Please check all that apply

Does the physician participate in the ICGG/Registry?

Yes

Does the physician have an active clinical or lab research interest?

Yes

If yes, please describe.

Is the physician involved with patient advocacy?

Yes

If yes, please describe.

Is the physician's contact information different from your facility's contact information provided earlier?

Yes

Physician's phone number

Physician's email address

Are there other physicians at your treatment center or hospital who treat patients with Gaucher Disease?*

Yes

Page 8: Physicians who treat Gaucher Disease (#4)

Name of the fourth physician at your facility who treats Gaucher Disease.*

This physician's primary specialty is:*

How many years has the physician treated Gaucher patients?*

1 – 5 years

6 – 10 years

11 – 15 years

16 – 20 years

More than 21 years

The physician treats the following:*

Infants

Children

Adolescents

Adults

Geriatrics

Please check all that apply

Does the physician participate in the ICGG/Registry?

Yes

Does the physician have an active clinical or lab research interest?

Yes

If yes, please describe.

Is the physician involved with patient advocacy?

Yes

If yes, please describe.

Is the physician's contact information different from your facility's contact information provided earlier?

Yes

Physician's phone number

Physician's email address

Final Comments

Is there anything else we should know?

Comments

This field is for validation purposes and should be left unchanged.

Treatment Center & Specialist Survey

New Treatment Center Survey

Page 1: Your Information

Page 2: Treatment Center

Treatment Center Primary Contact

Page 3: Patient Services

Page 4: Genetic Counseling

Genetic Counselor 1

Genetic Counselor 2

Genetic Counselor 3

Page 5: Physicians who treat Gaucher Disease

Page 6: Physicians who treat Gaucher Disease (#2)

Page 7: Physicians who treat Gaucher Disease (#3)

Page 8: Physicians who treat Gaucher Disease (#4)

Final Comments

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