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Surveys/Market Research

Surveys & Market Research


NPC Survey Opportunity

Name of Survey/Market Research Opportunity: Qualitative Analysis of Niemann-Pick Type C 5-Domain NPCCSS

Start Date and Deadline for Participation:  Currently open until recruitment is met. Expected September 2019

Criteria:  Caregivers of children (6 months or older) or adults with Niemann-Pick Type C; or adults diagnosed with NPC. All participants completing the survey (adult patient or caregiver) must be age 18 or older. U.S. participants only.

Number of participants required:  Approximately 36 participants for a web survey and approximately 18 participants for a telephone interview.

Location of Survey/Market Research Opportunity:  Online survey and telephone interview with a written pre-interview timeline activity to be completed at participant’s convenience.

Who is conducting the survey?  Clinical Outcomes Solutions

Sponsored By:  Orphazyme

Summary of opportunity:  The purpose of this research is to better understand, from patients and caregivers of patients with NPC, what their path to diagnosis was like, what major health-related events have happened since diagnosis, what their current experience of NPC symptoms is, which symptoms are most important to them, and how these symptoms impact their lives.

What does the study involve?  The study has two parts. First, participants will complete a 45-minute web survey. Then, some participants will be invited to further take part in a follow-up 60-minute telephone interview. Phone interview participants will also be asked to complete a pre-interview timeline activity that maps out their experiences before and after diagnosis.

Eligible participants will be given a $45 e-voucher in the form of a Visa/Amazon gift card for participating in the web survey. Participants selected to participate in the telephone interview will be given an additional $150 Visa/Amazon gift card upon completion of the interview.

This research is confidential. Any contact information you provide will only be used for the purposes of compensation and scheduling the phone interview if you take part.

How to Participate:  To receive a link to the web survey, or to find out more about this study, please contact Bridget Iwamuro by email at NPCSurvey@clinoutsolutions.com or by phone at +1 (312) 874-1868.

CLICK HERE TO REQUEST SURVEY LINK

This research study will be available to a limited number of participants. Please respond as soon as possible if you are interested in participating. Thank you!


NPC Survey Opportunity

Name of Survey/Market Research Opportunity:  Oral Medication Administration Survey

Start Date and Deadline for Participation:  April 15 – 19, 2019

Criteria (i.e. age, Niemann-Pick disease type, geographic location, other): Any patient living with Niemann-Pick type C or their primary caregiver.

Number of participants required:  N/A

Location of Survey/Market Research Opportunity:  Online

Sponsored/Funded By:   Orphazyme

Summary of opportunity:   Opportunity for people living with NPC or their caregivers to share their preferences for soft foods/liquids used to administer oral medications.

Community Contact:  Regan Sherman  res@orphazyme.com

How to Participate: surveymonkey.com/r/orphazymesurvey

.
Study invitation for Niemann-Pick Disease patients/caregivers:

Orphazyme is working to create a new therapeutic approach to treat Niemann-Pick disease Type C. The name of the active substance Orphazyme is investigating is called arimoclomol citrate, which is administered orally via hard capsules three times a day (morning, noon and evening). As with many active substances, the taste of arimoclomol citrate can be perceived as bitter. Capsules may be administered in two ways:

• Swallowed whole with a suitable amount of liquid

• Capsules may be opened and the powder dispersed into a liquid or soft food

Regulatory guidelines require that Orphazyme demonstrates the appropriate compatibility of arimoclomol in various liquids and soft foods. Therefore, Orphazyme would like your opinion on which liquids and soft foods you may prefer for the administration of oral medicinal products, to ensure that information provided to regulatory authorities is representative of what NPC patients and families are most likely to use. Please take a few moments to share your opinion via an online survey.

The time frame for this study is limited so please respond today if you are interested in participating. Thank you!


ASMD Survey Opportunity

Name of Survey/Market Research Opportunity:  Stated-Preference Survey to Measure the Preferences of Patients and Parents for Control of Outcomes and Symptoms of Acid Sphingomyelinase Deficiency (ASMD, also known as Niemann-Pick Disease type B)

Start Date and Deadline for Participation:  March 20-June 30, 2019

Criteria (i.e. age, Niemann-Pick disease type, geographic location, other):

For adult patients:

  • 18 years or older
  • Self-reported physician-diagnosis of chronic forms of ASMD (NPD type B or type A/B)
  • Not part of clinical trial for ASMD
  • Read and understand English
  • Resident of the US or the UK
  • Provide informed consent

For parents of patients:

  • 18 years or older
  • Have a child of any age with self-reported physician-diagnosis of chronic forms of ASMD (NPD type B or type A/B)
  • Child is not part of a clinical trial for ASMD
  • Read and understand English
  • Resident of the US or the UK
  • Provide informed consent

Number of participants required:  Minimum 20.  No maximum.

Location of Survey/Market Research Opportunity:  Online

Who is conducting the survey if not the sponsor?  RTI Health Solutions

Summary of opportunity:  To better understand and quantify the burden of different ASMD-related symptoms and patient’s preferences for treatment outcomes/symptom control.

Community Contact/How to Participate:  Andrew Fox  afox@rti.org

Anticipated high level summary date:  October 2019

3/19/2019 jjb

NPC Survey Opportunity

Start Date: 1/8/2019   End Date: 2/5/2019

Description of desired participants for study
Parents or caregivers of children diagnosed and currently living with Niemann-Pick Disease Type C (NPD-C or NPC) in the United States.

Study invitation for Niemann-Pick Disease patients/caregivers
BioVid (www.biovid.com), an independent medical marketing research firm, is seeking the opinions of parents or caregivers of children living with Niemann-Pick Disease Type C (NPD-C or NPC) regarding current treatments and expectations of future treatments for NPC.

This study is a 15-minute internet survey.  All qualified respondents will be paid $50 for their time and efforts. This survey is strictly confidential. Your name and address are only used to process payment.

Interested parents or caregivers can click on the below link to answer a few brief questions to determine qualification.  If qualified, the survey will begin immediately after the brief qualifying questions and should take no longer than 15-minutes to complete.

Should you have any questions or concerns, please feel free to contact Ginny Rillera directly via email at grillera@biovid.com or by phone at (215) 458-9319.

This survey will be available for a limited number of participants. To ensure participation, please click on the link above before the end of the month.  Thank you!

1/15/2019 jjb

ASMD Study Opportunity

Description of desired participants for study
Caregivers of patients, diagnosed with Acid Sphingomyelinase Deficiency (ASMD) / Niemann-Pick Type B or Intermediate Type A/B (respondents must be age 18+).

Study invitation for Niemann-Pick Disease patients/caregivers
Fulcrum Research Group, an independent market research firm, is conducting a study to better understand the experiences of patients with Niemann-Pick Disease / Acid Sphingomyelinase Deficiency (ASMD). Specifically, they are looking to speak with caregivers of patients diagnosed with Niemann-Pick Disease Type B or Intermediate Type A/B.

The research will be confidential, and insights will be used for research purposes only.

The study has two parts: a brief online survey and a telephone interview. If you qualify to participate, you will be asked to complete a 15-minute survey as Part I. For Part II, you will be interviewed over the phone for 60 minutes about your experience with Niemann-Pick Disease / ASMD (note: you will need access to a computer with internet during this time).

If you qualify for and participate in this research, you will receive a token of appreciation for your time and effort.

To find out more details about the study and to see if you qualify, please contact Kim Slusher via email at kim@pinpointpatientrecruiting.com or by phone at 980-677-1404.

The time frame for this research study is limited so please respond soon if you are interested in participating. Thank you!

2/1/2019 jjb
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