[acb-hsp] [leadership] Study Blind Children and Youth

Mon Apr 18 18:25:28 GMT 2011

---- Original Message ------
From: "Barbara Jackson LeMoine" <blemoine at acb.org
Subject: [leadership] Study Blind Children and Youth
Date sent: Mon, 18 Apr 2011 14:18:19 -0400

This information came to me as attachements.  The following is a 
letter and a
brochure.

APPROVED:  March 7, 2011

Dear Families,

My name is Dr.  Alfred J.  Lewy, and I am a professor of 
Biological Psychiatry
and Director of the Sleep and Mood Disorders Laboratory at Oregon 
Health &
Science University.  I am writing to ask for your help in 
reaching blind
youth without light perception (ages 5-20) who may be interested 
in
contributing to a research opportunity funded by the National 
Institutes of
Health.  Below is a letter of support from Carol Castellano, 
President of the
National Organization of Parents of Blind Children at the 
National
Federation of the Blind:

Dear Friends:

The National Organization of Parents of Blind Children is helping 
to find
participants for an important research study on sleep cycles in 
blind
children and youth.  This project has the real potential to help 
families
whose children are having difficulty with sleep patterns.  
Children and youth
with and without sleep difficulties are needed for the study.

If you are interested in finding out more about the project, 
please call
Sarah Alejandrino, Research Assistant, at (503) 494-1402 or 
toll-free at
1-866-424-6060, or e-mail her at sleeplab at ohsu.edu.

Carol Castellano, President

National Organization of Parents of Blind Children

(973) 377-0976

carol_castellano at verizon.net

www.nfb.org/nopbc

The body clocks of sighted individuals are synchronized to a 
daily 24-hour
cycle by the perpetual rising and setting of the sun, a process 
that is not
always possible for blind individuals who are unable to see light 
through
their eyes.  Entirely blind people sometimes have natural body 
rhythms that
free-run, meaning that their rhythms drift each day, similar to 
the
experience of jet lag when traveling.  This can lead to sleep 
complaints and
difficulty staying alert during the day and can also contribute 
to social
and academic challenges.

(For more information on this phenomenon, type "circadian rhythms 
in the
blind" into your internet search engine.) Through decades of 
research, we
have learned that we can adjust these body rhythms with low doses 
of
melatonin-a naturally occurring hormone produced in the brain.  
We think that
understanding this problem better and confirming melatonin as an
inexpensive, low-risk, and effective treatment will be invaluable 
to the
social and academic functioning of blind children not only in the 
United
States but also worldwide.

Our research group has been studying sleep disorders in the blind 
in the
Portland area for almost thirty years.  We have recently 
simplified our
procedures so that individuals can participate in our studies 
from home,
allowing us to include contributors from anywhere in the nation.  
In this
project, we will measure body rhythms by using wristwatch-style 
activity
monitors, sleep journals, and by periodically measuring melatonin 
levels in
saliva.  Sleep quality and daytime functioning will be measured 
by simple
questionnaires completed by participants or parents.  Daytime 
saliva
collection sessions for 16 hours will occur in participants' 
homes and will
be scheduled at their convenience.  For participants with 
qualifying body
rhythms, we will offer the option of taking a daily low-dose of 
melatonin in
an effort to confirm that it can be used to adjust these 
irregular body
rhythms in children and adolescents, as it does in adults.  All 
costs
associated with this study, including pill costs, will be covered 
by the
investigators, and participants will be compensated for their 
time.

The success of our research and the opportunity to positively 
impact the
health, social, and academic functioning of blind children and 
young adults
worldwide is dependent upon your help.  If you have any questions 
about our
project, would like to participate, or have any suggestions as to 
how we
might reach interested families, please contact Sarah 
Alejandrino, Research
Assistant, at sleeplab at ohsu.edu, (503) 494-1402, or 
1-866-424-6060.  Thank
you in advance for your support.

Sincerely,

Dr.  Alfred J.  Lewy, MD, PhD

Director, Sleep and Mood Disorders Laboratory

Oregon Health & Science University

Principal Investigator

eIRB #4664

Circadian Studies in Young Blind Children and Adolescents

Purpose

Many totally blind children and adults have trouble sleeping.  We 
know that
this is often due to a lack of light stimulation to the body's 
internal
clock, located in a part of the brain called the hypothalamus.  
The body
clocks of sighted people are re-set daily by the perpetual rising 
and
setting of the sun.  Natural sunlight is important for keeping 
the internal
rhythms of most sighted people on a 24-hour schedule.  However, 
this is not
always possible for those who are unable to see light through 
their eyes.
These children and young adults tend to have natural body rhythms 
that
free-run, meaning that their body rhythms drift, usually later, 
each day,
causing sleep and activity difficulties.

The purpose of this study is to learn more about body rhythms in 
blind
children and young adults that keep them from falling asleep at 
the desired
time or cause them difficulty staying alert during typical waking 
hours.  We
will conduct state-of-the-art, individualized body clock 
assessments for
each participant through the use of a highly-sensitive, 
wrist-worn sleep and
activity monitor and through occasional saliva sampling.  If a 
participant is
found to have a body rhythm that is out-of-sync with the 24 hour 
day, he or
she may have the option of taking a low-dose of melatonin daily.  
We hope to
confirm that melatonin can be used to adjust irregular body 
rhythms in
children, as it does in adults.

Is my child eligible?

We are currently looking for subjects who are:

.              Between the ages of 5-20, with or without sleep 
difficulties

.              Blind with no light perception

What will my family need to do to participate?

.              Phone screening

.              Complete questionnaire packet about general 
health and sleep
history

.              If the child/young adult qualifies:

.              Wear an ActiwatchR wrist device to monitor 
periods of rest
and activity

.              Keep a sleep diary

.              At home, conduct occasional saliva collections:

.              Use a cotton saliva collection device called a 
SalivetteR

.              Saliva sampling takes place as necessary through 
the study

.              If your child has an out-of-sync body rhythm, 
he/she may be
invited to take a daily low-dose of melatonin to see if it 
re-sets their
body clock for a better night's sleep!

.              Your child will also be compensated for their 
time, on
average between $115-$190/month!

.                All materials will be paid for by the 
investigators.

Why is this study important?

By studying blind children and young adults' body clocks, we hope 
to better
understand circadian rhythms and to develop the best treatments 
for
circadian sleep disorders that will improve functioning during 
the day and
maintain a consistent and regular sleep pattern.

Who is conducting this study?

Principal Investigator:

Alfred Lewy, MD, PhD

Co-Investigator:

Jonathan S.  Emens, MD, DABSM

Research Assistants:

Amber Laurie

Andrea Thompson

Sarah Alejandrino

Liska Havel

Robin Brown

OHSU IRB Study #4664

Sponsor

This study is funded by a grant from the National Institute of 
Child Health
and Human Development which is a part of the National Institutes 
of Health.

Sleep and Mood Disorders Laboratory

As an internationally-recognized center for research on 
melatonin, circadian
rhythms, and disorders related to the body clock, we aim to 
expand the
understanding of human circadian rhythms and to develop and 
refine
treatments for body clock disorders.

The Sleep and Mood Disorders Laboratory focuses on studies of 
circadian
rhythms ("body clocks") and how they are affected by melatonin 
and light.
The Laboratory continues to refine the understanding of how 
circadian
rhythms govern the sleep-wake cycle.

For more information or to enroll in this study, please contact:

Sleep & Mood Disorders Laboratory

(503) 494-1402 or 1-866-424-6060

sleeplab at ohsu.edu

Oregon Health & Science University

Sleep & Mood Disorder Laboratory

L469

3181 SW Sam Jackson Park Rd

Portland, OR 97239

Visit Us on the Web:

http://www.ohsu.edu/sleeplab

=========================
Barbara Jackson LeMoine
Public Policy Assistant
American Council of the Blind
2200 Wilson Boulevard, Suite 650
Arlington, VA 22201
202-467-5081
blemoine at acb.org
www.acb.org <http://www.acb.org/
=========================
The American Council of the Blind is the nation's leading 
membership
organization of blind and visually impaired people.

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