About CADASIL Our Program CADASIL studies at the Memory & Aging Program Other CADASIL research How to support CADASIL research About living with CADASIL CADASIL research areas    


WHAT TO EXPECT AT YOUR VISIT

Location
Caregivers and Family Members
Assessment
Education
Imaging Research
Length of Visit
Follow-Up
How to Prepare for Your Visit

Location
Patients and families are evaluated at the Memory & Aging Program, located at Butler Hospital, a major teaching hospital at Brown Medical School in Providence, RI. Certain parts of the evaluation may also take place on the Brown University campus or at other teaching hospitals affiliated with Brown. All these facilities are located near Butler Hospital and are easily accessible. If you are coming from out of the area, you may wish to spend a few nights in Providence to make your trip more relaxed. A list of local accomodations is available here.

Caregivers and Family Members
We recommend that CADASIL patients be accompanied on their visits by a family member or other caregiver. Often this person is a spouse, parent, or sibling. It is important that family members as well as patients understand as much as possible about CADASIL.

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Assessment
When you arrive at the Memory and Aging Program you will be evaluated by Diane Monast, RN, MSN, our nurse coordinator, and then have a neurological exam with Dr. Stephen Salloway, MD, MS. If you have not already had a genetic test for CADASIL, you may have blood drawn during the visit for genetic testing. If you are interested in participating in our medication treatment trial, you will meet with a research nurse to discuss participation. Most CADASIL patients who visit us also have a neuropsychological assessment with Dr. Paul Malloy, PhD, or a member of his team. This assessment takes about two hours and includes various tests of your memory and thinking.

Education
One of our most important goals is helping CADASIL patients and their loved ones to better understand the condition. We will explain what kinds of experiences you can expect to have living with CADASIL and what treatment and care options are available, including the latest research developments. We also talk with caregivers about managing their own stress and taking care of their mental and physical health. Finally, we provide information and advice about issues related to genetic testing and discussions about CADASIL with family members. For further advice on this topic we can provide a referral to a genetics counselor.

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Imaging Research
We are also working on developing the use of a special kind of magnetic resonance imaging, called diffusion tensor imaging (DTI), to look at the effects of CADASIL in the brain. If you are interested in participating in this study, you will have a DTI scan taken.

Length of Visit
The entire evaluation takes approximately three to five hours. It may take place over one or two days, depending on your preferences and schedule and whether it is an initial or follow-up visit.

Follow-up
We will remain in contact with you after your visit. If you live nearby or if you are participating in the research trial, we will schedule regular follow-up appointments. Follow-up visits usually take less time than initial evaluations. If you live farther away we can receive updates by phone and schedule a return visit at some point in the future. With you permission, we will also provide relevant information from your visit to your local neurologist, psychiatrist, or primary care provider so that they can better care for you.

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How to Prepare for Your Visit
On your first visit, you should bring the following information about your experience with CADASIL:

  • the symptoms (especially strokes, migraines, and mood and memory problems)
  • how long they have been present,
  • how often they happen and how bad they are
  • family history of CADASIL, strokes, or memory problems
  • other medical problems

You may want to discuss some of these topics, especially family history, with family members before your visit to help you prepare.

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Memory and Aging Program
Butler Hospital
345 Blackstone Blvd.
Providence, RI 02906


401-455-6403
Fax: 401-455-6405
memorydisorder.org

 

 

Website: Thea Brennan-Krohn
email: theabk@yahoo.com