Info on Doug Wallace

[Guest guest]

Because Mitochondrial Medicine is a new field, our program always straddles the

interface between the current " standard-of-care " and " research. " Patients are

referred to us (Dr. Wallace, et al) for mitochondrial evaluation to to determine

if they may be the result of a mitochondrial defect. To evaluate such patients,

we need to proceed through a series of steps progressing from the known, and

thus diagnostic, through to the unknown and thus research.

---------------------------------

Referrals are usually made to us from physicians inside and outside the UCI

system

The genetic counselor contacts the family and obtains written permission to

review medical and family history information in order to initiate a screening

process.

Cases are then reviewed by a UCI Mitochondrial Medicine Committee (physicians

and scientists)

If the patient is thought to possibly have a mitochondrial disease and may

profit from our study the referring physician is informed and the patient may be

brought to the UCI Medical Center or the campus General Clinical Research Center

(GCRC) for initial evaluation. This is done using insurance carrier funding.

We explain to the patient and/or family the nature of mitochondrial disease, the

types of standard-of-care diagnostic procedures that are available, and the

types of clinically relevant data that will be obtained and provided to the

patient’s physician and chart.

We take the necessary medical and family history and collect samples for routine

diagnostic tests that are missing from the patient’s previous evaluations again

using insurnce carrier funding.

Depending on the nature and complexity of the case, we then explain that there

is a significant possibility that we may not be able to determine the ultimate

molecular cause of their problem. Without this information, we cannot provide

substantive genetic counseling as to who would be at risk in the family for the

disease, or give reliable prognostic predictions. We emphasize that while we may

not resolve their case by already existing standard of care tests, MITOMED's

research program is dedicated to further investigation of their case, free of

charge to them. Additional investigations can involve additional clinical,

family, biochemical, somatic cell genetic, and molecular genetic studies.

Patient's may elect for us to take their case further, in the event that it

proves necessary. The informed consent form is designed to be flexible and lists

all of the procedures that may be necessary for the various types of

mitochondrial disease that we have encountered. On the consent we therefore

check only the procedures that will be required to evaluate the individual

patient and family, and have the patient initial them on the consent form. An

additional table is included in the informed consent that indicates which of the

tests will be standard-of-care and fee-for-service and which will be research

and free.

Laurie Fitzgerald laurie.fitzgerald@...> wrote: I may be wrong, but

believe Dr. Wallace is a PHD and not an MD. He has

always handled the research and never seen patients to my knowledge.

This is being dragged from the bottom of my brain, so let me know if I

am wrong.

laurie

> I don't know specifically about Dr. Boles and adult patients. Maybe someone

> that has seen him could say. I know his research interest is MIDS and you

> can't know of maternal inheritance without including, at the very least, the

> mother.

>

> Dr. Wallace is at UC Irvine. I don't know if his lab is up and running

> but heard it was supposed to be this year. Also heard that he is or will be

> working in conjunction with a clinical practioner. It would be worth

> calling his office to inquire. He and Dr. Shoffner were originally partners

> at Emory in GA.

>

> Dr. Shoffner definitely does see adults. Bill Rhead and Peltier in

> Milwaukee also see adults but they can not do a fresh muscle biopsies.

>

>

> Crook crookpj@...> wrote:

> Does Dr Boles take adult patients. I though I heard that he didn't. I

> didn't know about dr. Wallace. Tell me more about him. The drive is about

> 8 hours, but a lot closer than GA. Does either of them do fresh biopsies?

> Thanks

> Joanne

>

> Re: Re: Joanne: info about Dr. SHoffner in Atlanta

>

> Since you live in California, you might consider setting an appointment

> with

> Dr. Boles in LA or Dr. Wallace's newly established group in Irvine. I

> don't

> know how far either of these locations would be from your home, but alot

> closer than Atlanta.

>

> To obtain an appointment with Dr. SHoffner it is best to have your

> physician send a well written clinical summary with copies of the

> diagnostic

> lab reports to his attention. As a potential patient you can also do this

> (and might actually send significant reports that your physician might not

> include). He will review the records, call to discuss them and then

> determine if an appointment is indicated. The nbext step in the process it

> to obtain insurance approval for the visit and fresh muscle biopsy. His

> office staff will help with that process. Once insurance authorization is

> obtained they will arrange all of the necessary appointments.

> Kathleen Robins kdrobins@...> wrote:

> Hi, Joanne-

>

> I¹m in Northern California, and though I¹ve been diagnosed with CPEO for 14

> years, only got the mito diagnosis last week- so I¹m pretty new to this.

> I¹d love any information you can give me. I¹m having nightmares,

> literally,

> about my kids (ages 6 & 8)

>

> Thanks, Kathleen

>

>

>

> > I honestly don't know if Dr. Cohen is seeing new adult patients. The

> > last I heard there was a 18 to 24 month wait for a new pediatric

> > patients diagnostic consult for mito. It is far easier to get an

> > appointment with Dr. SHoffner in Atlanta. I can tell you that process if

> you are interested.

> >

> > What part of the US do you live in?

> >

> > kafeeninacup kdrobins@...> wrote:

> > Laurie and others-

> >

> > How did you get connected to Dr. Cohen? Through a referral by your

> > home Neurologist?

> > Through MDA?

> >

>

>

>

>