Soliciting our community

[Imogene]

We do our best to protect everyone's privacy.

We are presently wary of a recent solicitation for "participating in a study" (this morning and last night). We have banned their known IP address. We have reported them.

We cannot verify the validity or veracity of the solicitor. We suggest anyone who has contacted them might maintain their vigilance.

As in any solicitation, we should all be wary of unknown sources trying to acquire our personal information.

A word to the wise:
Be Wary

Jeanne

 

[LouLou]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Imogene</b></i>

We cannot verify the validity or veracity of the solicitor. </end quote></div>

Thanks Jeanne! The above statement is what is concerning. We should all be wary of giving out any of our contact info. Do google searches if a contact is in question.

That being said, I think it would be a disservice to the progress of finding a cure / treatment for CF to say that there should be no soliciting of study participants on the forum though. With the tighter restrictions on marketing groups due to HIPAA, many are having difficulties finding participants. Without hearing what we want and need drug / treatment discovery will be left to old studies, scientists, medical community and what 'looks good' to pump out.

I am in product development with a degree in Industrial Design and practicing Sales and Marketing. My husband is an Organic Chemist in drug development...so you can that I have particular interest in this subject.

I regularly participate in CF related marketing studies that I learn about via Joan Finnagan Brooks.

 

[Imogene]

We agree!

We didn't know this company.
When we told them our policy, they ignored us!

Jeanne

 

[JazzysMom]

Thank you Jeanne. I wasnt familiar with this company either & the fact that the initial posts went into the trash bin was a red flag for me.....just confirming my initial thoughts. I have no doubt that if a valid company who will follow the guidelines of the forum were to want to post that you would allow so! Its such a balance at times!

 

[LouLou]

were is the policy Jeanne and the guidelines Mel you speak of? I've seen this sort of other sites but I'm surprised I've been here since January and never seen it surprisingly.

 

[anonymous]

Ah found it. When you join the forums there's a statement and it says this...

"Advertisements, chain letters, pyramid schemes, and solicitations are also inappropriate on these Forums."

Wouldn't this statement mean that they were breaking the rules by asking for participants? I though you said you agree Jeanne. Maybe the are allowed to only if they ask the administrators. If I ever want to solicite I will ask first.

LouLou

 

[Imogene]

Thanks Lou Lou. I spend time looking for good sponsors, ones that would have meaning to our community. I have many in the works. I think this will add to the value for the community. One of my goals is to have relational sponsors.
PARI is an example of a company who will answer our questions.
I'm expecting others to come on shortly.

Jeanne

 

[julie]

I know we've been asked to participate in studies before (some conducted by a "survey monkey" program, which is actually legit) but I know it's been posted and allowed to stay because the initial poster asked permission from the administrators. And they've stated that in their posts, "this has been cleared through XYZ...".

That's how I recall it working at least. I think studies and research are great, espectially if we can help someone doing a project for their MBA or something like that, where they aren't backed by a legitimate company. But they've just got to get permission

 

[Emily65Roses]

I agree with the basic message here. It's fine to have surveys up for use, as long as they're legit. If they can get the okay from mods first, and then post, that's 100% fine by me. I did the surveymonkey thing Julie spoke of, and I did another one recently where I actually got a $25 check for my participation. If you contacted them, Jeanne, and they ignored you, then screw that one. Heh. But I hope you allow general surveys that have been cleared as legitimate (even if they aren't sponsors like Pari) to stay put. <img src="i/expressions/face-icon-small-smile.gif" border="0">