Re: Enrolling in NIH - protocol 00-CH-0160

[Guest guest]

Call NIH, ask for the operator and then ask for Dr. Lyssikatos. If you have

trouble, email me with your contact info and I'll have him call you.

>

> Hi All,

>

> So, my endo is ready to pass me off to someone at USC for care but I actually

put a call in to the NIH regarding the protocol I learned about on this board. I

fit the criteria and think it might be a great place to get more tests and

treatment if needed. Can those of you currently at NIH or who have been in this

protocol how long it took for them to enroll you and bring you in? Can you give

any details about the process? There is not much on the website and I only got

voice mail when I called. Any info would be much appreciated -Thanks! D

>

[Guest guest]

Thanks so much! I will try to get through tomorrow - if that doesn't work I will

send you my contact info.

> >

> > Hi All,

> >

> > So, my endo is ready to pass me off to someone at USC for care but I

actually put a call in to the NIH regarding the protocol I learned about on this

board. I fit the criteria and think it might be a great place to get more tests

and treatment if needed. Can those of you currently at NIH or who have been in

this protocol how long it took for them to enroll you and bring you in? Can you

give any details about the process? There is not much on the website and I only

got voice mail when I called. Any info would be much appreciated -Thanks! D

> >

>

[Guest guest]

Dr.Charalampos Lysikatos,

(NIH/NICHD)contact for the adrenal protocol email:

charalampos.lyssikatos@...

> > >

> > > Hi All,

> > >

> > > So, my endo is ready to pass me off to someone at USC for care but I

actually put a call in to the NIH regarding the protocol I learned about on this

board. I fit the criteria and think it might be a great place to get more tests

and treatment if needed. Can those of you currently at NIH or who have been in

this protocol how long it took for them to enroll you and bring you in? Can you

give any details about the process? There is not much on the website and I only

got voice mail when I called. Any info would be much appreciated -Thanks! D

> > >

> >

>

[Guest guest]

Basically, you contact Dr. Lyssikatos...he will talk to you about your

condition, labs, etc. Then, he will ask you to send him medical records. I

faxed a lot of mine since I had relevant copies of them. I also sent my adrenal

MRI in the mail. A couple weeks later, he called me and invited me to come to

NIH for a ten day stay to evaluate and possible AVS; eventual possible

treatment/surgery. Explained all details, answered all my questions about

anything and everything...then emailed my schedule and I bought a ticket and

packed, went, and there you go. Oh, one step, I forgot, they needed a letter of

referral from one of my local docs. 2 of my docs declined to write the letter,

the 3rd one reluctantly wrote it.

> > > >

> > > > Hi All,

> > > >

> > > > So, my endo is ready to pass me off to someone at USC for care but I

actually put a call in to the NIH regarding the protocol I learned about on this

board. I fit the criteria and think it might be a great place to get more tests

and treatment if needed. Can those of you currently at NIH or who have been in

this protocol how long it took for them to enroll you and bring you in? Can you

give any details about the process? There is not much on the website and I only

got voice mail when I called. Any info would be much appreciated -Thanks! D

> > > >

> > >

> >

>

[Guest guest]

May not need letter of refeffal as this is what is stated. Patients will be

accepted for evaluation based on referral from clinicians, or may be

self-referred, if they can provide evidence supportive of the diagnosis of

hormone oversecretion. Patients must be willing to return to the NIH for

follow-up evaluation.

> > > > >

> > > > > Hi All,

> > > > >

> > > > > So, my endo is ready to pass me off to someone at USC for care but I

actually put a call in to the NIH regarding the protocol I learned about on this

board. I fit the criteria and think it might be a great place to get more tests

and treatment if needed. Can those of you currently at NIH or who have been in

this protocol how long it took for them to enroll you and bring you in? Can you

give any details about the process? There is not much on the website and I only

got voice mail when I called. Any info would be much appreciated -Thanks! D

> > > > >

> > > >

> > >

> >

>