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Surveys/Market Research

Surveys & Market Research


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.

CLICK HERE TO BEGIN SURVEY

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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