Clinical Study - Interview

[stat1951]

FYI....


TREATMENT EFFICACY IN HYPOGONADISM STUDY

Mapi Values, a health care research company, is working on a study to develop a questionnaire about how hypogonadism affects patients lives and how effective their treatment is. Your doctor is helping us find patients with this condition who may wish to be involved in patient interviews. Mapi Values would like to invite you to participate in this study with the knowledge that your participation may serve to help other people with hypogonadism in the future.

If you agree to participate, you will be asked to complete a one hour, face-to-face interview with a trained member of the Mapi Values team. During the course of the interview, you will be asked to answer some questions regarding the impact that hypogonadism has on your life and the treatment that you receive for your condition and how effective it is. Mapi Values will use your comments to develop a questionnaire that assesses these impacts. At the end of the discussion, you will be given or mailed a $100.00 check for giving your time to help with our study.

Your participation in this study is entirely voluntary. Your participation will not result in any change of treatment to you and will not affect your relationship with your doctor or the quality of care you receive. Similarly, if you choose not to participate in this study, there will also be no change in your treatment, your relationship with your doctor or the quality of care you receive. Once you enter the study, you are free to withdraw from it at any time and for whatever reason, with no negative effects.

IMPORTANT NOTE
Medical and all other information collected during this study will be kept completely confidential. The information we receive from you and your doctor will be used only for the purposes of this study. No one (including your doctor) will be able to trace the information you give back to you. After the interviews are conducted, all participant responses will be grouped together, without names, so that your personal responses will be indistinguishable from the responses of others.

This is not a medication-related study. You will not receive a physical exam. No medical tests of any kind will be performed, and no medication will be used or provided for later use. We merely wish to discuss with you how your disease impacts your life.

Mapi Values will work with interested participants to try to coordinate a convenient time for the interview to be scheduled. You will be contacted once the location and time of the interview has been finalized. You may or may not be available to participate during the scheduled time and the interview slots will be filled on a first-come, first-served basis.

If you would like to participate in this study, please contact a member of the Mapi Values team (Catherine Chen or Jonathan Banks) at the toll-free telephone number: 1-866-741-2230. Mapi Values would like to thank you in advance for your help with this study.

 

[HeadDoc]

you are obviously trolling this board looking for volunteers. You may be performing a much needed service. However, I believe that offers for services and products need authorization from the admin here to post. I'd like to suggest that you contact the admin and perhaps SWALE to discuss your activity before any of us step forward. Personally, I would not give you time and priveleged information without know alot more. HD

 

[stat1951]

RE: Posting

No doc, I am NOT trolling this Board.

I am simply a TRT patient who checked into this trial study and felt that it could be something VERY beneficial to the entire HRT/TRT community.

I posted only what language that they sent me.

And wish that you would have checked with me via an e-mail or private post first before jumping to this conclusion.

Let me state this most emphatically, I do not have any affiliation with this firm or this study (other than myself participating by way of filling out their questionnaire and going thru their interview process).

If you note, the posted information provides contact numbers that members could use to obtain any more "detailed information" they might desire. Not being affiliated with the outfit in ANY way, how could I possibly supply "more detailed information"?

One can also give them their e-mail address and they will send you the questionairre forms via e-mail. If you decide you don't like the questioning then you can (as the rep put it) simply toss the papers or delete the e-mail and your relationship with them is done.

The individual that I dealt with was named Nathaniel S. Cahill and has the following contact info:

Administrative Assistant
Mapi Values USA
15 Court Square, Ste 620
Boston, MA 02108
(P) 617-720-0001
(F) 617-720-0004
nate.cahill@mapivaluesusa.com
Nate.Cahill@mapivaluesusa.com

You have my permission to obtain my full contact information from SWALE (or e-mail me) and you can verify with Mr Cahill that I am in no way affiliated with their organization, recruiting for their organization, etc., etc.

In fact, I still had his reply e-mail and here's a copy of that language:

ORIGINAL FROM ME:

Sent: Wednesday, July 06, 2005 2:31 PM
To: Nate.Cahill@mapivaluesusa.com
Subject: Re: Study

Mr. Cahill,

Do you have a link that goes to the particulars of this study? If so, I can post it on a couple hypogonadal web sites that I belong to.

Larry

REPLY FROM CAHILL:

Hi Larry, That is a very kind offer, and though it we dont have a link, feel free to post the attached message.

END

And the attached message that he had was just what I posted.

I find it strange that on another HRT board that members are being encouraged by multiple other members to check this out (and none of them are getting a "piece of the action" or some recruiting scheme "cut") while this board generates this type of a response???

Maybe the Board moderators should have - being progressive people - looked into this further and gotten more details and decided that "Hey! Maybe this is something that we should be encouraging our people to get involved with and get behind and keep sure that progress is maintained and even accelerated in the Male HRT field".... Maybe that would have been a more appropriate response.

No wonder most TRT protocols, methodologies and products stay "in the Dark Ages"!

Larry

 

[BigRagu]

dam 100$$ i wish tehy had this study where i lived....................

 

[HeadDoc]

stat1951, good points all. I very much support your objectives. I misread your presence as a vendor not an advocate. And of course, as a PhD, I support research and think that treatment will only be enhanced for all of us on HRT with continued research. Pat

 

[SWALE]

Larry--

Your efforts are greatly appreciated here.

HeadDoc was just doing the job he volunteered for. We are VERY careful here to screen all postings which may be of commercial value. There are just too many charlatans out there, eager to exchange your health for their bank accounts. Therefore we do prefer, when possible, that our members run such stuff by us first.

Even though we have not been able to update his title yet, he is indeed a Moderator here now, and has my full confidence to execute his duties regarding same as he sees fit.

Again, thank you for taking the time to post this useful and valuable information. I believe your effort will produce positive results.

I hope this clears this little misunderstanding. Thank you again.

--SWALE

 

[stat1951]

RE: Clinical Study

I received the full e-mail packet from this company Friday and just got a chance to download it and go through it. This company, MapiValley, is NOT doing an in-depth study per se, but is doing a "surface study" for the purposes of developing a questionnaire on how "hypogonadism affects patients lives and how effective their treatment is".

So this is just (apparently) Phase One of an effort that will eventually develop such a questionnaire.

That said, most members of this Board likely would NOT qualify to participate.

If you are currently on a TRT program you are basically not qualified for their process.

QUOTE:
Has the patient been withdrawn from testosterone treatment? Specifically, has the patient been free of treatment for the specified amounts of time before screening?

- 14 days after transdermal, oral or buccal treatment or
- 6 weeks after intramuscular testosterone injection
END QUOTE

If the answwer to that is "NO" then you aer not qualified... basically they are looking for males with hypogonadal diagnosis but who have not started TRT or who have been off of TRT for the above indicated time periods.

A couple of the other disqualifiers are as follows (it's a longer list, this is just a couple of the common ones):

- Hypogonadism related to aging (late onset hypogonadism)
- Sleep apnea

Believe me this list is much longer...

Also they are - at this time - looking for only a very limited number of participants.

With their criteria, I can see where that's all they'll get, a limited number! (I myself have sleep apnea so am out of the picture)

That said, there may be members here who do fit their criteria and would be interested in participation. There is NO cost to the participant, in fact for answering the questionnaire and sitting through a one hour interview, the particpant gets a check for $100.

Larry

Also.... members may want to e-mail Mr. Cahill and urge him to send the information back up the ladder (to those actually sponsoring the study) that we - as the TR patient community - would like to see a comprehensive questionnaire developed for current TRT patients of ALL categories (whether primary or secondary or due to late-age onset or whether you have sleep apnea, etc., etc.). I plan on doing that this afternoon.

 

[HeadDoc]

thanks for the follow-up. This work looks promising.

 

[SWALE]

Ya, good work, Larry. Since we have a group that is already wired into this issue, let's see if we can get them to REALLY come up with something good.