NIH awards 'supplemental grants' to Lipkin, Katz, Fletcher, other big names

[BurnA]

Someone just gave me the following info they received in an email:

Due to interest in tomorrow’s call, we have set up a new conference line. If you will be calling from the U.S., please use the following dial-in information for the telebriefing.



Dial-in: 866-844-9416

Participant passcode: 8048800

Any international numbers ?

 

[Nielk]

Dr. Joe Breen - we help investigators to fill out applications for studies. You don't need an RFA to submit an application.

 

[Nielk]

We need investigators to send in a lot of applications for ME/CFS research. This is how more funding is built up for specific diseases. Advocates should push investigators to send in applications.

 

[Nielk]

Vicky Whittmore about working group. Short term - supplement to currently funded efforts - 7 have been done.

 

[Nielk]

Working on research priorities. They received many excellent suggestions from stakeholders. They ae reviewing them now. They initiated common data element projects. Common language data so they can be compared across sites and studies. This was discussed at the IACFSME conference with researchers.

 

[Nielk]

They are collaborating with Canadians and the UK. Trying to encourage applications - especially young investigators. Issued two notices of intent to issue two RFAs. Multisite centers and for data mgmt coordinating centers.

 

[Nielk]

Koroshetz - main point of trans NIH WG is to incentivise coordinating approach of investigators coming up with ideas and commitments. NIH will listen and fund the most innovative ideas. we need to drum up interest in investigators and to form alliances with patients and physicians. They are committed in the long term. Sensitive that timing is right. They can't say now how many there will be. It depends how many come in. At times, there is a need for a second attempt.

 

[Nielk]

Dr. Avi Nath - So - we have been working very hard on the protocol. It's taking longer than we thought. It's started. We brought in two healthy volunteers to help us and a few are lined up to come. Early next week we will start with patients. We are pleased the way things have been working out.

 

[Nielk]

We received a lot of input from patients and researchers and we have focus groups and seminar series for various aspects of the disease. We formed a committee of experts to help us with patient selection.

 

[Nielk]

questions - Robert Miller - it's great to hear about RFAs. I've heard that researchers don't want to put in time and energy for RFAs until there is a dollar amount set on it - a specific amount so they know what they are applying for.

If you put the amount out - the researchers will come. If you don't, they will not come. (good point)

Asking about clinical trial for Ampligen as well. (really long question)

 

[Nielk]

A - Koroshetz - the funding for the centers is significant - we can't give an amount right now. Once the RFA comes out there will be an amount. It is comparable to other centers from NIH. The funding is coming from several institutes, This will be equivalent to any other centers that we do.

I understand that the process of NIH funding is a competitive one which means many get rejected but it is persistence that pays off. We need 100s of people who will work on this field and persistence is important. This is targetted to ME/CFS alone. The patient community needs to align themselves wit quality investigators.

The groups in the centers will come together and decide what is most important to test (in reply to Ampligen).

 

[Nielk]

Q - Eileen Holderman - what is NIH funding for the intramural study? How llong will it take? A - Nath -They charge it as the study progresses - on a need basis.

They have no publication date yet. They have to look and see when the data will be ready.

 

[Nielk]

Q - Brian Vastag - question about the makeup of the panel - has it changed?(not sure - I think it's the review panel?)

A - it is something that is posted on the website and it does change at times. Every grant is received and reviewed - so that then everyone can improve and send it back for another review. This is a democratic process.

 

[Nielk]

Q - Mary Dimmock

NIH common element does not include criteria requirements of PEM?

A - it doesn't specify criteria but looks at important data that needs to be included.

 

[Nielk]

Q. Diane Beal (sp?) from Solve - why is cancer institute not part of trans NIH WG? and her daughter with MECFS was part of XMRV study but when this was stopped nothing was followed up with her.

A - they are part of the trans NIH WG. (didn't get the rest)

 

[viggster]

A few funding notes from the NIH telecon call today:

Dr. Koroshetz said the upcoming research consortia will be funded with amounts similar to research consortia for other disorders. Funding is coming from multiple institutes. The awards will be for multiple years.

For comparisons, recently funded consortia include:
- One focused on rare diseases, $29 million in 2014. https://www.nih.gov/news-events/new...search-consortia-study-more-200-rare-diseases
- Autism biomarker consortia, $28 million over 4 years. https://www.nih.gov/news-events/new...e-partnership-fund-research-autism-biomarkers

The intramural protocol is underway - the second healthy control is at NIH now. The study costs $1 million to $2 million a year, although that's a ballpark because they don't keep tabs on all expenses for intramural studies.

 

[Nielk]

Q - Donna Pearson - about the fact that we need champions for MECFS an patients need to find them. Patients are tapped out - we need NIH to be the champion - we need urgency so that we can have an impact for the current and next generations.

A - good question. This is a generic issue that NIH deals with. To empower consortium in US is extremely important - to build a little army to move the science faster.

 

[Nielk]

Q - Lily Chu - MECFS group will be open to all investigators - can we watch the seminars online so that we can know what is going on and new investigators can learn from them.

A - I think there is merit in that. (cannot hear the rest )
It's a good idea for outreach efforts - for the consortia

 

[Nielk]

That's it . If you have more questions, you can e-mail them in....we apologize that things are progressing slowly but it's a good process.

 

[Denise]

Call transcript (from NIH) to be available next week.