Sickle Cell Disease Awareness
A candle loses none of its light by lighting another candle!
RESEARCH 2 PARTAKE N
In order to make a difference in present treatment, we must activitly persue updated medical information. The best way is by questionnaires, research, studies and surveys.
We will add more as we receive and review them. If ou know of any, please email us to for review and post. Thank you.
Please note the studies at a childrens hospital often need adult ages. They will modify, so adults in other medical facilities can participate. Please contact for more info.
Local ~ Los Angeles * National ~ USA * Global
This page includes:
Local
I. Pulmonary Hypertension in Pediatric Sickle Cell Patients II. Chronic Transfusions and Pulmonary Hypertension in Pediatric Sickle Cell Patients III. Clinical Importance of Treating Iron Overload in Sickle Cell Disease
National
I. National Chronic Fatigue Survey
Global I. CURE FOR SICKLE CELL DISEASE PATENTED!
Local ~ Pulmonary Hypertension in Pediatric Sickle Cell Patients
Pulmonary Hypertension in Pediatric Sickle Cell Patients
Study ID: CCI-07-01448
Valid from 3/20/09 to 3/3/10
Elevated blood pressure in the lungs is a problem that occurs in patients with sickle cell anemia. There are some known causes of this elevation which we can measure in the blood and with ultrasound. We are wondering if the patients who receive chronic transfusions have a lower risk than patients with sickle cell disease who are not receiving transfusions. We are performing a study in which we perform ultrasound exams of your heart and a blood vessel in your arm. These are not painful or invasive procedures. We will send some lab tests during your regularly scheduled blood draw, in which the total amount would only be about 1 to 2 tablespoons. We will then try to determine if the same risk factors for elevated blood pressure in the lungs are present in patients with sickle cell disease whether or not they are on transfusion therapy.
This study is being conducted by Dr. John Wood of Cardiology at CHLA. Other investigators on this study are: Dr. Thomas Coates of Hematology at CHLA, Dr. Jon Detterich of Cardiology at CHLA, and Dr. Susan Clastor of Hematology at CHLA.
The following is a description of the requirement for the study. We will contact you to discuss this study further.
Study Participation Requirements:
” Patients who decide to participate in this study will be scheduled for their regular clinic visit as usual and during this visit you will have blood drawn, an ultrasound examination, and special heart rate monitoring with a shirt which measures heart rate and breathing pattern.
” You would also be asked to wear a special wrist watch at night while you sleep, that you would take home. After one night of wearing the watch, you would send it back to the hematology department in a postage paid envelope given to you at the clinic visit with the watch.
Eligibility Criteria:
To participate in this study, the patient must meet the following criteria:
” You must be a NON TRANSFUSED PATIENT
” Must have sickle cell disease.
” Must be at least 10 years old.”
” Must have not had a sickle crisis in previous 4 weeks.
Payment:
Participants will receive $50.00
Contact Person: Study Location:
Jon Detterich
Office: (323) 361-2405 4650 Sunset Blvd.
Pager: (213) 209-5364
Email: jdetterich@chla.usc.edu
Local ~ Chronic Transfusions and Pulmonary Hypertension in Pediatric Sickle Cell Patients
Chronic Transfusions and Pulmonary Hypertension in Pediatric Sickle Cell Patients
Study ID: CCI-07-01448
Valid from 3/20/09 to 3/3/10
Elevated blood pressure in the lungs is a problem that occurs in patients with sickle cell anemia. There are some known causes of this elevation which we can measure in the blood and with ultrasound. We are wondering if the chronic transfusions you receive to help with your disease process are also helping to prevent the elevation of blood pressure in the lungs.
Dr. John Wood and Dr. Jon Detterich of Cardiology at CHLA are conducting this study. Other investigators on this study are: Dr. Thomas Coates of Hematology at CHLA, and Dr. Susan Clastor of Hematology at CHLA.
The following is a description of the requirement for the study. We will contact you to discuss this study further.
Study Participation Requirements:
” You will be scheduled for your regular transfusion.
” You will have blood drawn as part of your normal screening laboratory exam, which will be about 1 to 2 tablespoons of blood.
” You will then have ultrasound exams of your heart and a blood vessel in your arm,
” We will then monitor your heart rate and respiratory rate using a special shirt.
” You will then have your regular transfusion.
” You would also be given a special wrist to wear overnight for 1 night and then you will bring it back during a return visit in 12 hours to 5 days.
” This follow up visit will then include an extra blood draw and are repeat of all the same ultrasound exams and special monitoring with the shirt.
Eligibility Criteria:
To participate in this study, the patient must meet the following criteria:
” Must have sickle cell disease.
” Must be at least 10 years old.
” Must have been receiving blood transfusions for >1 year.
” Must have not had a sickle crisis in previous 4 weeks.
Payment:
Participants will receive $50.00 per visit for a Total of $100.00
Contact Person: Study Location:
Jon Detterich
Office: (323) 361-2405 4650 Sunset Blvd.
Pager: (213) 209-5364
Email: jdetterich@chla.usc.edu
Local ~ Clinical Importance of Treating Iron Overload in Sickle Cell Disease
RESEARCH STUDY FOR SICKLE CELL DISEASE
Study ID: CCI-08-00274
Valid from - to N/A
Clinical Importance of Treating Iron Overload in Sickle Cell Disease
Patients with sickle cell anemia often require blood transfusion as part of the treatment for their disease. Each teaspoon of packed red blood cells contains about 5 mg of iron. Since humans have no way to get rid of excess iron, the levels of iron in sickle cell patients increase rapidly with each transfusion. While iron is necessary for many functions in our body, too much iron can be very dangerous and can cause damage to your blood vessels, red blood cells, liver, hormone producing glands (pancreas, pituitary and thyroid) and heart. The damage from iron overload can take years before the problem is severe enough to make you sick. Treatments to remove iron from the body can take months to years to work. It is very hard to know exactly what damage to your organs is caused by your sickle cell disease or by the iron overload.
The purpose of this research study is to see if there has been any damage to your body that may have occurred because of too much iron (iron overload). And if you do have iron overload we want to know whether treatment can take away any of that damage.
This study is being conducted by Dr. Thomas Coates at CHLA. Other investigators on this study are: Dr. Thomas Hofstra and Dr. Susan Claster of Hematology, Dr. John Wood and Dr. Jon Detterich of Cardiology, Dr. Hollie Jackson of Radiology and Dr. Roberta Kato of Pulmonary.
The following is a description of the requirement for the study. If you are interested in being a part of this study please contact the study coordinator below.
Study Participation Requirements:
” Patients who decide to participate in this study will be scheduled for the baseline/screening exams as required for the study. These exams are: MRI to measure cardiac and liver iron, medical history and physical exam, blood tests, hearing and eye exam and a special test called a red cell survival test. You will learn more about all these procedures when the consent is given to you.
” If you qualify to be treated for iron overload then your participation in this study will last up to 1 year and you will be required to take the medication Exjade®. This medication removes iron from the body.
Eligibility Criteria:
” Must have sickle cell disease
” Must not be on a frequent transfusion program
” Must be at least 14 years of age
” Must not require blood transfusions more than 3 times a year
” Must have labs within the normal range per CHLA standards
” Must not have any severe uncontrolled chronic illnesses
Payment:
” There will be participant reimbursement for your time. This money is to cover any expenses you may incur while participating in the study. The details of the reimbursement are in the informed consent.
Contact Person: Study Location:
Anne Nord, RN, BSN, CCRP
Clinical Research Nurse-Hematology 4650 Sunset Blvd.
Office: (323) 361-8507
Email: anord@chla.usc.edu
National ~ National Chronic Fatigue Survey
National Fatigue Survey Launched by The Fatigue Management Institute
The Survey is open to adults with a chronic medical condition, can be completed anonymously, and can be accessed at: http://research.fit.edu/fmi
The National Chronic Fatigue Survey, an internet-based survey of fatigue related to chronic illness, has been launched by the Fatigue Management Institute of Florida Institute of Technology. The survey is designed to gather information on the nature and impact of fatigue associated with chronic medical disorders. The survey findings will be used to better describe the experience and severity of fatigue related to chronic medical conditions and will contribute to the development of improved techniques for managing fatigue. Summaries of survey findings will be posted on our web site following the close of the survey.
Hey Dr. Thom Harrell,
I read about the National Chronic Fatigue Survey on a yahoo group that I am a member of. Would you mind if we posted your National Chronic Fatigue Survey on our web site? We post surveys and studies that benefit persons diagnosed with Sickle Cell.
Thank you for doing this research."
Nita,
"Thanks for inquiring. We would very much like for you to post information about the survey and a link to the survey on your site, and with any other organizations that can help us reach persons diagnosed with Sickle Cell Disease. Please feel free to use any of the information on our site. We prefer that you provide a link to our site rather than directly to the survey, it adds only one additional click.
We have been unable to identify any published research on Sickle Cell disease and fatigue management. If you are aware of any, please let me know. We would certainly like to have a large enough subset of participants with Sickle Cell Disease to be able to analyze and report that data separately - there is just so little empirical or survey information available at present, any additions are valuable.
Please keep in touch, and hopefully I can update you in a month on what kind of response rate we are getting from persons diagnosed with Sickle Cell Disease."
Global ~ doing research and went to the site 9 23-09
PRESS RELEASE
No. 01
DATE: APRIL 2, 2009
CONTACT: ROBERT H. BROYLES, PhD http://sicklecellcurefoundation.org
E-MAIL: robert.broyles@sicklecellcurefoundation.org
TELEPHONE : 001-405-922-5774
CURE FOR SICKLE CELL DISEASE PATENTED!
U.S. RESEARCH FOUNDATION TO BEGIN CLINICAL TRIALS
Scientists around the globe know that a newborn’s production of fetal red blood cells (HbF) declines soon after birth and transitions to the production of adult red blood cells. Medical researchers have also shown that HbF alleviates the symptoms of sickle cell disease.
Two years ago Dr. Robert H. Broyles demonstrated under controlled laboratory conditions that gene regulation therapy can re-start the body’s production of HbF- even in adults. This discovery could lead to the elimination of the terrible symptoms of this deadly disease inherited by over a thousand children each day.
After establishing the Sickle Cell Cure Foundation, Inc. (SCCF), a non-profit medical research firm, Dr. Broyles is eager to begin clinical trials of the cure that is expected to be more effective and cost far less than standard sickle cell treatments. Twelve countries have already granted patent protection for this break-through discovery. Also, SCCF’s legal counsel recently received a Notice of Allowance from the U.S. Patent Office validating the new cure.
Soon SCCF intends to issue a worldwide request for proposals, aimed especially at non-profits, that would like to partner with SCCF in its conduct of clinical trials. Qualified entities are asked to e-mail their expressions of interest no later than April 12, 2009.
