Patient/Caregiver Discussion for Lennox-Gastaut Syndrome/ARS

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If you or your child suffer from Acute Repetitive Seizures or Lennox-Gastaut Syndrome, Triangle Insights Group invites you to participate in patient and caregiver discussions in December 2016. We are reaching out to patients who suffer from ARS or LGS to share their opinions and experiences. A donation to a charity of your choice or an honorarium will be provided.

We are completing discussions throughout the country, including Atlanta, Boston, Chicago, Dallas, Houston, Los Angeles New York, and Philadelphia. For more information, please contact Ryan Coe at <edited: no email addresses per forum policy>
 
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Frink

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Hi Triangle,
Welcome to CWE.

Could you possibly provide some more information like - Who are you? Who do you represent? Why are you interested in ARS/LGS patients and caregivers? What are these "discussions" about? To what end are these "discussions" being held?
 

Nakamova

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Looks like Triangle Insights is a business consulting firm to life sciences and pharmaceutical companies: http://www.triangleinsights.com/
Ryan, you need to be transparent about who is sponsoring these discussions and what their ultimate purpose is.
 

Bernard

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t_i sent me the following via PM:
If you are an Lennox-Gastaut Syndrome and/or ARS patient or the caregiver of a patient suffering from Lennox-Gastaut Syndrome and/or ARS, Triangle Insights Group invites you to participate in Lennox-Gastaut Syndrome/ARS product discussions via phone, skype or in-person. We are specifically interested in patients (and/or their caregivers) who have had some experience on Onfi (clobazam) in the past. Triangle Insights Group is a healthcare focused market research firm located in Durham, NC. We are working with a company who is trying to develop an FDA-approved medication for the treatment of Lennox-Gastaut Syndrome and ARS. We would like to hear your experiences with Lennox-Gastaut Syndrome and/or ARS or caring for a loved one with Lennox-Gastaut Syndrome and/or ARS to advise this company as they develop a treatment to better meet the needs of patients. A donation to a charity of your choice or an honorarium will be provided for your participation in this study. For more information, please contact Megan Thomas at <redacted> or visit our website.
If you are interested in participating in this group's study, feel free to send triangle_insights a PM. It's up to you if you want to divulge any personal information after that.
 

Dutch mom

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I know many caregivers/parents to children with LGS but I seriously doubt whether are interested to participate.

I also know, 'live' or just from the internet, over hundred patients with the syndrome. But not a single one of them is capable to communicate about his/her syndrome, not by mail. not by phone, Skype and not in-person. Most of them aren't capable to normal communication at all. LGS patients usually are (severely) mentally disabled and suffer from retardation, especially when it concerns communication, understanding etc. Unfortunately this usually comes with the syndrome...
 
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Diastat Users Invited to Participate in a Study

If you are a patient or the caregiver of a patient suffering from epilepsy, Triangle Insights Group invites you to participate in a discussion about a pharmaceutical currently in development. These discussions will be conducted via phone, video-conference or in-person, and flexible communication methods can be accommodated.

We are specifically interested in speaking with patients (and/or their caregivers) who have previously used Diastat (diazepam rectal gel) or who have been prescribed Diastat in the past two years.

We would like to hear about your experiences in order to better advise the development of a treatment that could improve the lives of epilepsy patients and their caregivers. Specifically, the topics of discussion include the following:
  • The experience of epilepsy diagnosis
  • Daily living with epilepsy and its symptoms
  • The treatment experience with Diastat
  • Perceptions of a new product in development

A $150 payment to you or a charity of your choice will be provided in exchange for your participation in these discussions. If you are interested in participating or would like more information, please contact us directly using the private messaging system.

Triangle Insights Group is a healthcare focused market research firm located in Durham, NC. We are conducting outreach on behalf of a pharmaceutical company with a medication in development for potential FDA-approval for the treatment of epilepsy. You can learn more about Triangle Insights Group by visiting our website at TriangleInsights.com.
 
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