Re: Handle - more from Meg

[Guest guest]

Meg,

I'm glad to see clarification on your opinons on the HANDLE Institute

below. I'm sure those who have benefitted by the program will

appreciate it.

Regarding the research itself or the use of the roster, here is my

perspective. No research study ever done will please everyone or be

adequate in everyone's eyes. I am not the author of this research

regarding CHARGE, but I believe it will possibly lead to further

studies. Most research studies a tiny portion of an issue and often

that study leads to other information or perspectives or studies.

Generally, until a study is complete, it's not possible to say what it

will or will not divulge. Since CHARGE is so complex, and so devastating

in some cases, a real concerted effort to understand it is imperative.

It is beneficial for many people or entities to be looking for answers.

Not all of those people will be on the same page. If there are flaws in

this particular study, they were not seen by the evaluating group at

UNISA. A university approved research study deserves attention. If

there are flaws, certainly they will be taken into account in possible

further studies of this topic are undertaken.

Regarding the roster, that matter would best be addressed between the

authors of the study and yourself and/or the foundation. It is easy to

taylor registration responses for the conference to request privacy or

not.

As for this list, a specific request was made for information on the

study and that information was supplied for that person or for others

who might be interested in participating in a study. Additionally

information was posted in the past with the same provision of

information. Certainly that is what the list is for. Those who are

interested in helping with a study are welcome to do so. Those who are

not wishing to do so are under no obligation to do so.

Thanks again for your clarification.

Handle - more from Meg

Ok, I need to clarify here. I apologize for any misunderstanding. I

did NOT mean to imply that I don't like what the HANDLE institute does

for families and kids. I know that many, many individuals with CHARGE

and many other disorders have benefited greatly from HANDLE evaluations

and therapies. I am very glad they exist. We have invited them to

participate in the CHARGE conferences in the past and probably will

again in the future. We have put information about them in the

newsletter and in the Manual. I also think it is wonderful that they

are interested in doing research on CHARGE. They do not need my approval

or the Board approval to do research.

[Guest guest]

Meg,

I'm glad to see clarification on your opinons on the HANDLE Institute

below. I'm sure those who have benefitted by the program will

appreciate it.

Regarding the research itself or the use of the roster, here is my

perspective. No research study ever done will please everyone or be

adequate in everyone's eyes. I am not the author of this research

regarding CHARGE, but I believe it will possibly lead to further

studies. Most research studies a tiny portion of an issue and often

that study leads to other information or perspectives or studies.

Generally, until a study is complete, it's not possible to say what it

will or will not divulge. Since CHARGE is so complex, and so devastating

in some cases, a real concerted effort to understand it is imperative.

It is beneficial for many people or entities to be looking for answers.

Not all of those people will be on the same page. If there are flaws in

this particular study, they were not seen by the evaluating group at

UNISA. A university approved research study deserves attention. If

there are flaws, certainly they will be taken into account in possible

further studies of this topic are undertaken.

Regarding the roster, that matter would best be addressed between the

authors of the study and yourself and/or the foundation. It is easy to

taylor registration responses for the conference to request privacy or

not.

As for this list, a specific request was made for information on the

study and that information was supplied for that person or for others

who might be interested in participating in a study. Additionally

information was posted in the past with the same provision of

information. Certainly that is what the list is for. Those who are

interested in helping with a study are welcome to do so. Those who are

not wishing to do so are under no obligation to do so.

Thanks again for your clarification.

Handle - more from Meg

Ok, I need to clarify here. I apologize for any misunderstanding. I

did NOT mean to imply that I don't like what the HANDLE institute does

for families and kids. I know that many, many individuals with CHARGE

and many other disorders have benefited greatly from HANDLE evaluations

and therapies. I am very glad they exist. We have invited them to

participate in the CHARGE conferences in the past and probably will

again in the future. We have put information about them in the

newsletter and in the Manual. I also think it is wonderful that they

are interested in doing research on CHARGE. They do not need my approval

or the Board approval to do research.

[Guest guest]

I had a problem receiving the questionnaire. The last conference I went to was

In Indiana, now how did they get my info to send me the questionnaire? I also

attended their workshop and felt very uncomfortable with their philosophy and

treatment of CHARGE children not to mention how much they charged for their

therapy. A lot of new parents looking for therapies for their young children

will buy into it and pay anything to help their little ones but I would check

their references before dishing out the dough on this one! I will not

participate in the survey and find it a bit sneaky on their part.

Sundi

n 12

[Guest guest]

Thank you,.

pam

[Guest guest]

Thank you,.

pam

[Guest guest]

I appreciate your considerate response, Pam.

:-)

RE: Handle - more from Meg

Thank you,.

pam

[Guest guest]

----- Original Message -----

From: " Keedy "

> I'm glad to see clarification on your opinons on the HANDLE Institute

> below. I'm sure those who have benefitted by the program will

> appreciate it.

,

First let me start by saying that I am not the parent of a Charger, I am

however an interested participant of this list and have been virtually since

its inception as my son has a CHARGE phenotype and before we knew his exact

diagnosis the diagnosis of " best fit " was Charge. I have no vested interest

in the CHARGE Foundation, I am however a para health professional and

actively involved in research.

I didn't see Meg post anything against The Handle Institute at all in her

post - all I saw (and I re-read it three times after seeing your response)

was a professional and member of the CHARGE Foundation clarifying that it

was NOT a Charge Foundation research project and that as a professional she

had concerns about the validity of any results which may be gathered.

Quite the opposite of what you are suggesting, Meg would have been remiss in

not responding from a professional and ethical point of view.

If there are flaws in

> this particular study, they were not seen by the evaluating group at

> UNISA. A university approved research study deserves attention.

If this is a university approved study and they are using a list of

conference participants without the consent of the conference organisers I

would be approaching the universities Research Ethics Committee and lodging

a complaint, and I may do so.

I have studied research and I am currently actively involved in research

(not related to CHARGE). So let me speak from a professional point of view.

The first thing that you do with any research proposal is to get permission

from the overseeing bodies ethics committee. You must abide by that

overseeing bodies ethics to do the research under their name.

Those ethics have three primary concerns (many minor ones but three major)

The first is safety, the second is privacy and the third is that any

research conducted is valid.

I can't comment on the first as I have not seen the study.

Privacy - if any organisation is sending out unsolicited or unsanctioned

requests or especially if they are sending out the actual questionnaire or

study to another organisations list, whether that list be publicly available

or not, then they are breaching every privacy and professional rule in the

book. In fact, with view to current US laws (if this is a US group) then

they are probably breaching the new US laws on privacy. They certainly are

breaching the health privacy laws.

Any professional group doing a study should at every step of the way, follow

professional ethics, to the point of pain. And any researcher will tell you

that ethics are at times a major pain in any study. However ethics are there

to protect everyone, participants and researchers.

I know of no reptuable organisation, university or otherwise who would

sanction such a course. If any professional journal or peer review committee

understood that such was the method of recruiting research participants the

whole study, no matter what the findings, would find their way into the

trash bin, no questions asked.

Just yesterday I received an email from a fellow CHARGE list member. It did

not come through the list but my address was most likely taken from the fact

that I have posted previously on the list.

The person who sent the mail is a professional, however I consider the way

the email was sent, and the way that my address was obtained to be

completely unprofessional.

The email offered to me the opportunity to obtain a CD with CHARGE related

material. That material may be excellent, it may be ground breaking stuff -

but by breaching basic privacy etiquette and professional conduct I will

always view work by this person with high suspicion.

If a professional person or organisation cannot abide by a professional code

of conduct then I am sorry they will always be viewed with utmost suspicion

by their peers.

> Generally, until a study is complete, it's not possible to say what it

> will or will not divulge.

While that is true and whilst there will always be design flaws in any study

the whole point of research design and pilot studies is to test the validity

of a document.

My question as a professional is that I would like to see the study design

research and the pilot. Chances are they were never done if the population

is not clearly identified and the parameters of the questions are not

specific.

The absolute first rule of any study design is to identify your population.

I may well be on many CHARGE lists around the world, I have been to CHARGE

conferences in he US and elsewhere. But any attempt to include my child in a

study of children with CHARGE would be highly unethical unless they first

identified that he, like children with di-george and VCF etc have a CHARGE

phenotype - not CHARGE itself.

The second rule of any study design is to ensure that you have a broad

spectrum of the population being studied. By using a conference list as a

source of distribution you are creating a design fault before you start. All

of these points and probably a dozen others should have been easily

identified by any design scrutinisation.

>>Most research studies a tiny portion of an issue and often

> that study leads to other information or perspectives or studies.

The only thing worse than no research on any topic is BAD research. Bad

research can undo the hard work of previous researchers and jeopardise the

future of any research in the area.

It is one thing about the internet that concerns me. So many groups, without

any guiding body or professional background, conduct " surveys " - and I have

seen the damage that they can do. There is a reason that researchers follow

guidelines and protocols. Stepping around those protocols, and breaching

those guidelines is dangerous to say the least.

> It is beneficial for many people or entities to be looking for answers.

> Not all of those people will be on the same page. If

> there are flaws, certainly they will be taken into account in possible

> further studies of this topic are undertaken.

Agreed. But again only if the work is valid and ethical. And yes it will be

taken into account with further studies however if this work is doomed to be

statistically and professionally invalid because of poor design structure

then it is unethical. Even if simply because they have asked a group of

parents to participate. Valid research shows that study participants are

astute people. They will not participate in research project after research

project ad nauseum. If they find that they have participated in a research

project, spent a great deal of time completing a study, to find that the

results were invalid or never published then you mar the possibility that

they will ever participate in other valid research projects in the future.

Bad research is more than a project ending up in the bin or even being

pulled apart by their peers - it jeopardises true and positive research in

the future.

>> It is easy to

> taylor registration responses for the conference to request privacy or

> not.

I have not seen a CHARGE Foundation list of conference attendees that did

not have a privacy clause already attached. And nothing mitigates a

professional group using a list of attendees whether their was a privacy

clause attached or not - its unprofessional and thats all that there is to

it.

> Certainly that is what the list is for.

Yes - that is what the list is for and I am sure that Casey and whoever is

list owner at the present time would agree. However, again, there is

netiquette and any person who wishes to be taken seriously should follow

that

netiquette. List netiquette means that if you are posting something in which

you have a vested interest, or if it is promoting another group,

organisation in any way other than as a personal opinion/experience that you

state so and request permission to post by the list owner.

Using a list without approval to send things to, or to use addresses from a

list that are obtained by deception or unethically, would and should,

relegate such mailings to the trash because it is spam - as is what happened

with the mail I received yesterday, I never even bothered to send it on to

my friends who do have children with CHARGE. I as a professional have very

little interest in a professional who does not behave in a professional

manner. It does nothing for the credibility. Instead I see it as a means of

self promotion, in which I have no interest. My interest in this area is

with the children.

And in closing I reiterate that these are my views. I am a membr of a CHARGE

group, but not the foundation, I have met Meg once and other than that I

have no connection. These viewpoints are as a professional, and I applaude

Meg for being a professional and speaking up and warning folk about

unethical behaviour.

Everyone is free to form their own opinions about whether they wish to

complete the questionnaire, I for one wouldn't even consider particpating in

a research project that was not being conducted professionally.

" I wanted a perfect ending. Now I've learned, the hard way, that some poems

don't rhyme, and some stories don't have a clear beginning, middle, and end.

Life is about not knowing, having to change, taking the moment and making

the best of it, without knowing what's going to happen next. Delicious

ambiguity. "

- Gilda Radner -

Keep Looking For Rainbows!!

_--_|\

/ \

\ _.--._ /

v , Mum to (8 years, T-18 Mosaic)

http://members.optushome.com.au/karens

[Guest guest]

Wow.

thank you.

pam

> ----------

> From:

> Reply To: CHARGE

> Sent: Tuesday, November 18, 2003 10:52 PM

> To: CHARGE

> Subject: Re: Handle - more from Meg

>

> ----- Original Message -----

> From: " Keedy "

> > I'm glad to see clarification on your opinons on the HANDLE Institute

> > below. I'm sure those who have benefitted by the program will

> > appreciate it.

>

> ,

>

> First let me start by saying that I am not the parent of a Charger, I am

> however an interested participant of this list and have been virtually since

> its inception as my son has a CHARGE phenotype and before we knew his exact

> diagnosis the diagnosis of " best fit " was Charge. I have no vested interest

> in the CHARGE Foundation, I am however a para health professional and

> actively involved in research.

>

> I didn't see Meg post anything against The Handle Institute at all in her

> post - all I saw (and I re-read it three times after seeing your response)

> was a professional and member of the CHARGE Foundation clarifying that it

> was NOT a Charge Foundation research project and that as a professional she

> had concerns about the validity of any results which may be gathered.

>

> Quite the opposite of what you are suggesting, Meg would have been remiss in

> not responding from a professional and ethical point of view.

>

> If there are flaws in

> > this particular study, they were not seen by the evaluating group at

> > UNISA. A university approved research study deserves attention.

>

> If this is a university approved study and they are using a list of

> conference participants without the consent of the conference organisers I

> would be approaching the universities Research Ethics Committee and lodging

> a complaint, and I may do so.

>

> I have studied research and I am currently actively involved in research

> (not related to CHARGE). So let me speak from a professional point of view.

>

> The first thing that you do with any research proposal is to get permission

> from the overseeing bodies ethics committee. You must abide by that

> overseeing bodies ethics to do the research under their name.

>

> Those ethics have three primary concerns (many minor ones but three major)

> The first is safety, the second is privacy and the third is that any

> research conducted is valid.

>

> I can't comment on the first as I have not seen the study.

>

> Privacy - if any organisation is sending out unsolicited or unsanctioned

> requests or especially if they are sending out the actual questionnaire or

> study to another organisations list, whether that list be publicly available

> or not, then they are breaching every privacy and professional rule in the

> book. In fact, with view to current US laws (if this is a US group) then

> they are probably breaching the new US laws on privacy. They certainly are

> breaching the health privacy laws.

>

> Any professional group doing a study should at every step of the way, follow

> professional ethics, to the point of pain. And any researcher will tell you

> that ethics are at times a major pain in any study. However ethics are there

> to protect everyone, participants and researchers.

>

> I know of no reptuable organisation, university or otherwise who would

> sanction such a course. If any professional journal or peer review committee

> understood that such was the method of recruiting research participants the

> whole study, no matter what the findings, would find their way into the

> trash bin, no questions asked.

>

> Just yesterday I received an email from a fellow CHARGE list member. It did

> not come through the list but my address was most likely taken from the fact

> that I have posted previously on the list.

>

> The person who sent the mail is a professional, however I consider the way

> the email was sent, and the way that my address was obtained to be

> completely unprofessional.>

>

> The email offered to me the opportunity to obtain a CD with CHARGE related

> material. That material may be excellent, it may be ground breaking stuff -

> but by breaching basic privacy etiquette and professional conduct I will

> always view work by this person with high suspicion.

>

> If a professional person or organisation cannot abide by a professional code

> of conduct then I am sorry they will always be viewed with utmost suspicion

> by their peers.

>

> > Generally, until a study is complete, it's not possible to say what it

> > will or will not divulge.

>

> While that is true and whilst there will always be design flaws in any study

> the whole point of research design and pilot studies is to test the validity

> of a document.

>

> My question as a professional is that I would like to see the study design

> research and the pilot. Chances are they were never done if the population

> is not clearly identified and the parameters of the questions are not

> specific.

>

> The absolute first rule of any study design is to identify your population.

> I may well be on many CHARGE lists around the world, I have been to CHARGE

> conferences in he US and elsewhere. But any attempt to include my child in a

> study of children with CHARGE would be highly unethical unless they first

> identified that he, like children with di-george and VCF etc have a CHARGE

> phenotype - not CHARGE itself.

>

> The second rule of any study design is to ensure that you have a broad

> spectrum of the population being studied. By using a conference list as a

> source of distribution you are creating a design fault before you start. All

> of these points and probably a dozen others should have been easily

> identified by any design scrutinisation.

>

> >>Most research studies a tiny portion of an issue and often

> > that study leads to other information or perspectives or studies.

>

> The only thing worse than no research on any topic is BAD research. Bad

> research can undo the hard work of previous researchers and jeopardise the

> future of any research in the area.

>

> It is one thing about the internet that concerns me. So many groups, without

> any guiding body or professional background, conduct " surveys " - and I have

> seen the damage that they can do. There is a reason that researchers follow

> guidelines and protocols. Stepping around those protocols, and breaching

> those guidelines is dangerous to say the least.

>

> > It is beneficial for many people or entities to be looking for answers.

> > Not all of those people will be on the same page. If

> > there are flaws, certainly they will be taken into account in possible

> > further studies of this topic are undertaken.

>

> Agreed. But again only if the work is valid and ethical. And yes it will be

> taken into account with further studies however if this work is doomed to be

> statistically and professionally invalid because of poor design structure

> then it is unethical. Even if simply because they have asked a group of

> parents to participate. Valid research shows that study participants are

> astute people. They will not participate in research project after research

> project ad nauseum. If they find that they have participated in a research

> project, spent a great deal of time completing a study, to find that the

> results were invalid or never published then you mar the possibility that

> they will ever participate in other valid research projects in the future.

> Bad research is more than a project ending up in the bin or even being

> pulled apart by their peers - it jeopardises true and positive research in

> the future.

>

> >> It is easy to

> > taylor registration responses for the conference to request privacy or

> > not.

>

> I have not seen a CHARGE Foundation list of conference attendees that did

> not have a privacy clause already attached. And nothing mitigates a

> professional group using a list of attendees whether their was a privacy>

> clause attached or not - its unprofessional and thats all that there is to

> it.

>

> > Certainly that is what the list is for.

>

> Yes - that is what the list is for and I am sure that Casey and whoever is

> list owner at the present time would agree. However, again, there is

> netiquette and any person who wishes to be taken seriously should follow

> that

> netiquette. List netiquette means that if you are posting something in which

> you have a vested interest, or if it is promoting another group,

> organisation in any way other than as a personal opinion/experience that you

> state so and request permission to post by the list owner.

>

> Using a list without approval to send things to, or to use addresses from a

> list that are obtained by deception or unethically, would and should,

> relegate such mailings to the trash because it is spam - as is what happened

> with the mail I received yesterday, I never even bothered to send it on to

> my friends who do have children with CHARGE. I as a professional have very

> little interest in a professional who does not behave in a professional

> manner. It does nothing for the credibility. Instead I see it as a means of

> self promotion, in which I have no interest. My interest in this area is

> with the children.

>

> And in closing I reiterate that these are my views. I am a membr of a CHARGE

> group, but not the foundation, I have met Meg once and other than that I

> have no connection. These viewpoints are as a professional, and I applaude

> Meg for being a professional and speaking up and warning folk about

> unethical behaviour.

>

> Everyone is free to form their own opinions about whether they wish to

> complete the questionnaire, I for one wouldn't even consider particpating in

> a research project that was not being conducted professionally.

>

> " I wanted a perfect ending. Now I've learned, the hard way, that some poems

> don't rhyme, and some stories don't have a clear beginning, middle, and end.

> Life is about not knowing, having to change, taking the moment and making

> the best of it, without knowing what's going to happen next. Delicious

> ambiguity. "

> - Gilda Radner -

>

> Keep Looking For Rainbows!!

> _--_|\

> / \

> \ _.--._ /

> v , Mum to (8 years, T-18 Mosaic)

> http://members.optushome.com.au/karens

>

>

>

>

> Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>