The FuRST study presently is based on a structured interview of behavioral symptoms (like depression) that lasts about 2 hours. It contains the standard UHDRS questions plus a lot more.

It is an important study to help define "what matters" -- which is vitally important for FDA drug approval -- for those who are premanifest or within 2 years of motor diagnosis.

This study is being done in some PREDICT centers. And some are done by going to volunteers at a time and place convenient for them. Thanks to Phil Hardt's assistance, I'm going to Phoenix and Tuscon to conduct interviews with 9 volunteers. And . . If there are any on this list going to the HDSA convention who might be interested in this important study -- please contact me at lavonne@hddrugworks.org -- and we'll hook up for a good cause.

I would like to support what Lavonne has said. This is a very important study which will improve clinical trials. We need a more sensitive assessment instrument so that meaningful improvements can be detected when they are achieved, not just dramatic one.

Thanks Lavonne

[www.hdyo.org]

Just to reinforce what LaVonne and Marsha have already said, the FuRST-pHD (Functional Rating Scale Taskforce for pre-Huntington's Disease) is a new clinical rating scale that is currently under development. It will measure clinical signs and symptoms well before the current diagnostic criteria that rely largely on motor deficits, and is designed to be used in the testing of future therapies. A research paper about the methodology is currently being written and will be available soon. FuRST is still in development to ensure that all relevant signs and symptoms of pre- and early HD are captured, and that the right questions/statements are formulated so that pre-HD individuals are able to describe their symptoms. There will then be a validation stage where pre-HD individuals, their families, caregivers, clinicians, and researchers will be consulted to check that there is good acceptance that the scale is accurate and does what it's intended to do.

This sounds like a great idea!

Thanks Simon,

I've got my appointment for the FuRST Study next week the day before I fly out for the American convention.

Tc, Matt.

[www.hdyo.org]

Is there any information on locations? I don't see this on the clinical trials websites that I normally check, nor did my PREDICT testing center know about it as of 2 weeks ago.

Will that info be available when the Research Paper that you mention comes out?

That would be good to know Sara, I could spread it around using the youth page on Facebook, I'm taking part at Birmingham in the UK.

[www.hdyo.org]

I'm asking around to find out about participating centers for FuRST. I know much of this is being done through the PREDICT and REGISTRY studies, but probably not at all centers; there's a lot more people involved in PREDICT than are needed for FuRST, I think. The specific centers involved won't be part of the research paper, that's more about the methodology such as how the consultation process works, what kind of groups of people are involved (pHD individuals, their families, caregivers, clinicians, researchers, clinical scale developers etc.), why the scale is needed, why it is being done in the particular way it is etc. Once that paper is finalized I will have more info to share about it. In the meantime I will find out where FuRST is conducting interviews.

Sounds like it would be good to send out locations via HDTrials.org?

If it is not available in a location near you, and if there are several interested folks in one location, I can come to you. This past weekend -- with Phil Hardt's organizing help, I met with 5 from Phoenix and 4 from Tuscon.

I have asked the folks running a trial I am in, in Boston ( Charlestown ) to look into it, and will share with you, Lavonne & co. what they say.

-Brett T