Country's leading research institute willing to research morgellons

[suzzie38]

Leslie,
Before I(we) make donations..I think it is important to be informed of several things, such as..


A. PROPOSED RESEARCH RATIONALE

● Describe why you are conducting the study. Identify the research question being asked.


B. SPECIFIC PROCEDURES TO BE FOLLOWED

● Describe in a step-by-step manner what you will require subjects to do in this study.

● Identify all data you will collect.


C. SUBJECTS TO BE INCLUDED

Describe:

● The inclusion criteria for the subject populations including gender, age ranges, ethnic background, health status and any other applicable information. Provide a rationale for targeting those populations.

● The exclusion criteria for subjects.

● Explain the rationale for the involvement of any special populations

● Provide the maximum number of subjects you seek approval to enroll from all of the subject populations you intend to use and justify the sample size.

●If you do not include women, minorities and children in your subject pool, you must include a justification for their exclusion.


D. RECRUITMENT OF SUBJECTS

● Describe your recruitment process in a step-by-step manner.


F. CONFIDENTIALITY

● Describe what steps you will take to maintain the confidentiality of subjects.

● Describe how research records, data, specimens, etc. will be stored and for how long.

● Describe if the research records, data, specimens, etc. will be destroyed at a certain time. Additionally, address if they may be used for future research purposes.


G. POTENTIAL RISKS TO SUBJECTS

● There are always risks associated with research. If the research is minimal risk, which is no greater than every day activities, then please describe this fact.

● Describe the risks to participants and steps that will be taken to minimize those risks. Risks can be physical, psychological, economic, social, legal, etc.

● Describe provisions for ensuring necessary medical or professional intervention in the event of adverse effects to participants or additional resources for participants.


H. BENEFITS TO BE GAINED BY THE INDIVIDUAL AND/OR SOCIETY

● Describe the possible direct benefits to the subjects. If there are no direct benefits, please state this fact.

● Describe the possible benefits to society

How will pertinent information be reported to subjects, if appropriate, at a later date?...(This is a VERY important question)

Does the research include any activities that would require signed consent in a non-research context?

Will you provide the subjects with a written statement about the research (an information sheet that contains all the elements of the consent form but without the signature lines)?


L. SUPPORTING DOCUMENTS

● Recruitment advertisements, and letters.

● Survey instruments, questionnaires, tests, debriefing information, etc.

● If the research is a collaboration with another institution

● If the research will be conducted in schools, businesses or organizations

And, most importantly, since this is 'privately funded', the name of the facility/institution conducting the research...The research facility should provide a detailed agenda, stating specifics on all the above mentioned and much more...

I pray for the day a 'cure' is found, There would be nothing better than a 'top notch' facility studying this affliction..Please let me know when this detailed information will be available, so it can be 'presented' in a business like, logical manner, to persuade people of financial influence to support this research..Thanks for all the hard work and dedication you put into this illness, hence helping others...xxxsuzzie

[pez1103]

Suzie - I will try my best to answer your questions. The institute provided the MRF with a grant proposal which outlines (1) the goals of the research, (2) the specifics on exactly how the blood will be analyzed, and (3) the breakdown of the costs. Keep in mind that not all information about the proposal is appropriate to post on a website. (It looks like you copied these questions from a government sponsored clinical study. Many of these would not apply.)

A. PROPOSED RESEARCH RATIONALE

The research would focus on uncovering the differences in the blood of people with Morgellons and those who do not have the disease. The short term goal of the research is to identify markers that would allow us to diagnose Morgellons disease. The long term goal is aimed at using these markers to understand the cause of the disorder itself.

B. SPECIFIC PROCEDURES TO BE FOLLOWED

● Describe in a step-by-step manner what you will require subjects to do in this study.

Subjects would provide blood

● Identify all data you will collect.
Researchers would collect identifying markers from the blood to compare the blood of those who have the disease and those who do not.

C. SUBJECTS TO BE INCLUDED
To be determined

D. RECRUITMENT OF SUBJECTS
To be determined

F. CONFIDENTIALITY
To be determined

G. POTENTIAL RISKS TO SUBJECTS
It's a simple blood test

H. BENEFITS TO BE GAINED BY THE INDIVIDUAL AND/OR SOCIETY
Determine the causitive agent of Morgellons disease so that it can be diagnosed and, hopefully, cured.

L. SUPPORTING DOCUMENTS
This will be conducted by one institution.

People will be updated by the MRF regarding the progress. Any findings will also be published in medical journals.

Thanks

Suzie - I'm not sure what your concerns are exactly, so maybe you should call me and we can talk.

If anyone else has more questions about the proposal, please PM me. thanks

[hilly]

I feel concerned that if we make things too complicated or difficult it might put people off doing the research. I do hope not.. I do understand the worries and concerns tho' and realize that everything must be properly regulated to allay fears............ However, as far as I am concerned anyone can have my blood, my fibres, my bugs my name, age sex, address and any other info they want if it helps to find a cure...lol... Hilly

[pez1103]

Hilly - you are very sweet, but I don't think that this information is too complicated or asking too much. The MRF received an initial proposal. If they accept the proposal, the other details will be worked out. The MRF cannot accept the proposal unless they can pay for it.

Suzie - Not all grant proposals are the same. Perhaps the NIH, for example, requires all the information that you listed above up front. It looks like the information that you requested applies more for a clinical study. For this proposal, the MRF just requested a description of the actual research that would be performed.

If someone with "financial influence" needs more information before they can donate, please PM me. It is inappropriate for me to post the name of the institution on the web.

I can tell you that this reseacher has published more than 350 articles in medical journals, that the institution is one of the most renowned in the world, and any findings from them would not be questioned by the medical establishment. It will be difficult to raise enough. I hope we do. If we don't, however, there are several other researchers who have submitted grant proposals to the MRF and want to get involved. This is a very exciting time -- we just need to raise funding.

[pez1103]

I gave $1000 this morning. If 232 people could do the same, we could cover this project.

[hilly]

Well done Pez.... come on everyone.... we'll get there... it's got to be worth it...

[Cindy Casey]

Has anyone heard anything from Pez or the MRF? Hilly did you contribute for a research project? Are they funding any research? I am curious about the nine other researchers that were mentioned...and hoping that all nine are working on finding answers to Morgellons.

Cindy

[posey]

There are laws which govern any research.

I haven't looked yet but here is a good link to start looking for them:

Clinical research laws - Google Search

I don't know about anyone else but I don't have any $s to p away. I would for sure have to have some definitive answers; AND ESPECIALLY FOR MY HUSBAND. (emphasis only) He would not just fork over money not knowing the who is, where, and whats about it all.

We are not cheap, and would certainly give to such a needed cause as this, but if I would even tell him about this from a forum I think he'd think I really lost it and hide all check books as well as cut up my CCs.

Just a thought.

Hugs,
posey

[posey]

This link is to a current PDF doc which is 132 pages long. What I like about it is there are many, many medical hyperlinks to click on.

It is called:

International Compilation of Human Research Protections
2010 Edition
Compiled By:
Office for Human Research Protections
U.S. Department of Health and Human Services
FINAL VERSION


http://www.hhs.gov/ohrp/internationa...ompilation.pdf