Sickle Cell Disease Awareness

A candle loses none of its light by lighting another candle!

RESEARCH 2 PARTAKE N

We can not continue to be hesitant and allow our opinions to keep us from extending the lives and saving the lives of others based of what some stupid people did with The Tuskegee Syphilis Experiment (also known as the Tuskegee syphilis study or Public Health Service syphilis study)! 

If we all were in that same thinking mode Barack Obama would not be President, because he would have chosen not to get educated and had the audacity to run for President of the USA.

Actually, the revelation of this study’s failures led to major changes in U.S. law and regulation on the protection of participants in clinical studies. Now studies require informed consent, communication of diagnosis, and accurate reporting of test results.

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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 you 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: 

Understanding CLINICAL RESEARCH

ClinicalTrials.gov to find clinical trials conducted in the United States and around the world 

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                          IV. Local UCLA ~ Join a cool study that lets you use a cell phone and website

V. Phase III Trial for L-glutamine

National

I.  National Chronic Fatigue Survey                                                                          II. NIH blood stem-cell transplant studies

Global 

I.  CURE FOR SICKLE CELL DISEASE PATENTED!

 

*Please note:  Form and flyers are on the PDF Page.

Understanding CLINICAL RESEARCH

 CLINICAL RESEARCH AND SICKLE CELL DISEASE

What is Clinical Research?

Research is an organized way to study, explore and analyze diseases and new ways to treat them.  Clinical research projects, also known as clinical research studies and clinical trials, are research studies that measure the safety and effects of new treatments and procedures in human volunteers.

What are my rights when I participate in Clinical Research?

A patient who participates in clinical research is protected by State and Federal Laws.          As a research patient you will have the right to know:

·         The purpose of the study

·         Any procedures or tests to done during the study

·         Any risks or discomforts that could happen during the study

·         Whether you will benefit from the study

·         Any alternative to being in the study

·         What will happen if there is a complication in the study

·         The opportunity to ask questions and have them answered before and during the study

·         To be able to withdraw (remove) yourself from the study at anytime and it will not affect your future care

·         You will always get copies of the consent you sign

·         There will never be any coercion (force) for you to participate in research

 

 

What Sickle Cell Disease Clinical Research is going on at CHLA? 

There are many research studies going on at CHLA for Sickle Cell Disease.  The research studies include:

·         Pulmonary Hypertension

·         Iron Overload

·         Pain in Sickle Cell Disease

·         Blood Flow in Sickle Cell Disease

·         Treatment for Pain Crisis during Hospital Admission

 Why should I be a part of Clinical Research?

By being a part of clinical research you can play an active role in your own health care, understand and know about the latest research treatments before they are widely available. 

 What is Informed Consent?

Informed consent is the process of learning what the clinical research is about.  It gives you the chance to read the information, ask questions and decide whether or not you want to participate.  The doctors, nurses and support staff involved in the study will help explain all the details of the study to you.

How do I get involved in clinical research at CHLA?

Call 323-361-SCD0 (7230) to find out how you can get involved with clinical research at Childrens Hospital Los Angeles.

Where can I get more information?

Childrens Hospital Los Angeles                                                                                  323-361-SCD0 (7230)    www.chla.org                                    http://www.youtube.com/childrensLA                      http://www.facebook.com/ChildrensLA

Sickle Cell Disease Foundation of California                              http://www.scdfc.org    info@scdfc.org                                                             Phone (310) 693-0247 Toll free (877) 288-CURE (2873)

Center for Cancer and Blood Disease New Referral Line                                              323-361-4100

Sickle Cell Disease Association of America                                                      (800) 421-8453   scdaa@sicklecelldisease.org

Local CHLA ~ Clinical Importance of Treating Iron Overload in Pediatric & Adult Sickle Cell Patients

RESEARCH STUDY FOR SICKLE CELL DISEASE

Study ID: CCI-08-00274

Valid from - to N/A

Get info - Flyers in PDF Page

Local UCLA ~ Join a cool study that lets you use a cell phone and website

Get info - Flyers in PDF Page

Local SCDFC Contact ~ Phase III Trial for L-glutamine

Sickle Cell Disease Research Opportunities
Your participation is invaluable

We would like to inform you of two opportunities to participate in research studies for sickle cell disease.

The Phase III Trial for L-glutamine is a clinical trial for persons ages 5+ with sickle cell anemia or sickle beta zero thalassemia.  L-glutamine is an amino acid that may be found in the foods we eat. It is being tested to see if it can lesson the painful effects of SCD. For information, please call the SCDFC at (310) 693-0247 or send an email to info@scdfc.org.

There is also a research study through UC San Francisco on chronic pain in adults (18+) with SCD. This is a survey/questionnaire and each participant will receive a $20 gift card upon completion. For more information please contact Lou Ella (Kitty) Taylor, RN, CNS, PhD(c) at (510) 909-5972 or email at louella.taylor@ucsf.edu or you may also call (415) 476-9407.

National ~ ClinicalTrials.gov

http://clinicaltrials.gov 

ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov gives you information about a trial's purpose, who may participate, locations, and phone numbers for more details. This information should be used in conjunction with advice from health care professionals.

As of 12-18-09 200 are listed from these categories:

Recruiting, Enrolling by invitation, Not yet recruiting, Active, not recruiting, Completed, Completed Has Results, Suspended, Terminated, Withdrawn.

Enter Sickle Cell in the upper right box and press Search.

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."

National ~ NIH blood stem-cell transplant studies

Health care providers -- and sickle cell patients and family members who may be interested in joining NIH blood stem-cell transplant studies -- may call 301-402-6466 for more information. Calls will be returned within 48 hours.

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

(Read full press release in Flyers in PDF page)

 

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