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SICKLE CELL 911: FAST ACCESS TO GUIDELINES & BETTER CARE

Empowering medical professionals to implement evidence-based sickle cell action. Amplifying the patient's voice in care.

"Only about 1 in 4 patients with sickle cell disease receive the standard of care described in current guidelines, and many studies have shown that patients do not receive treatment for their pain as soon as, or in appropriate doses as, other patients." - HHS Office of Minority Health

SCDAA HEALTH ALERT - COVID-19 AND SICKLE CELL DISEASE:
An Outline to Decrease Burden and Minimize Morbidity

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IF A PATIENT GIVES YOU THIS CARD, PLEASE CLICK THE IMAGE FOR NIH GUIDELINES!
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PLEASE TRIAGE AS ESI 2 PER NIH AND AHRQ

"It is not possible to manage pain at triage for patients with renal colic, cancer, or sickle cell crisis. These patients should be triaged as ESI level 2 and rapid placement should be facilitated whenever possible." - AHRQ, Emergency Severity Index (ESI) Implementation Handbook (see page 26)   Web site   PDF

NIH SICKLE CELL PAIN ALGORITHM

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HOW TO CONDUCT A SICKLE CELL ASSESSMENT

These videos from Duke University's School of Nursing demonstrate how to conduct an assessment for a sickle cell patient's vaso-occlusive crisis (6 mins) and a patient with a high number of ED visits who might face perceptions of opioid addiction or drug-seeking behavior (3 mins).

ABOUT THE SAFE(R) INITIATIVE

SAFE(R) stems from the sad and dangerous reality that  many individuals with sickle cell opt to "wait out" an acute episode as long as possible rather than endure a traumatizing trip to the ED where they're likely to be stigmatized and/or undertreated. This treatment time lost equates to eventual organ failure or other tragic complications.

 

We're asking the medical community to partner with us in assuring patients that they'll be SAFE(R) in your facility because you'll adhere to CDC and NIH guidelines in their care. 

Access/download a compilation of NIH guides specific to SAFE(R). 

Printable patient SCD911 SAFE(R) Card.

Learn more about the SAFE(R) Initiative.

CDC CLARIFICATION ON OPIOIDS FOR SCD

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Read the clarification letter from CDC to ASH online.

Read the CDC's statement against misapplication of the guideline here.

Opioids and Sickle Cell
NIH Sickle Cell Guidance
NIH EVIDENCE-BASED MANAGEMENT OF SICKLE CELL DISEASE
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NIH full recommendations

Click the image at left for a PDF of the full 161-page NIH recommendations.

 

This link will take you directly to the full document at NIH's site.  

NIH Quick Guide to Recommendations

"The purpose of this Guide to Recommendations is to provide clinicians with a digital resource of the treatment recommendations extracted from the full report. For more information, please refer to the full report. . . ."

Click the image at right for a pdf of the 48-page Quick Guide. This link will take you directly to the Quick Guide document at NIH's site.  

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NIH GUIDELINES: ACUTE CARE BREAKOUT

For ease-of-access, this section contains a breakout of individual acute complications of sickle cell with links to corresponding PDFs from the Quick Guide and the full recommendations.

What does the patient report? Remember, there are no labs that can indicate or confirm a patient's level of pain!

Acute Chest Syndrome: Quick  Full

Acute Stroke: Quick  Full

Anemia: Quick  Full

Fever: Quick  Full

Hepatobiliary: Quick  Full

Multi-System Organ Failure: Quick  Full

Ocular Conditions: Quick  Full

Priapism: Quick  Full

Renal Failure: Quick  Full

Splenic Sequestration: Quick  Full

Vaso-occlusive crisis/pain episode: Quick  Full

Complications
ASH Pocket Guides
ASH POCKET GUIDES FOR ACUTE AND NON-ACUTE CARE MANAGEMENT
ASH POCKET GUIDE - MANAGEMENT OF ACUTE COMPLICATIONS OF SICKLE CELL 
ASH sickle cell acute care pocket guide

Click the image to access a PDF of ASH's Management of Acute Complications of Sickle Cell Disease pocket guide. 

Presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute's Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014. (Click here to go directly to ASH's web site for links to all its sickle cell pocket guides.)

ACCESS ALL ASH POCKET GUIDES FOR  MANAGING SICKLE CELL
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Click here to go directly to ASH's web site for links to all the sickle cell pocket guides. The following links will take you to individual PDFs for download.

 

Cardiopulmonary and Kidney Disease in Sickle Cell Disease: Screening and Management
This pocket guide includes key recommendations from the American Society of Hematology 2019 guidelines for sickle cell disease: cardiopulmonary and kidney disease, available soon in Blood Advances.

Health Maintenance and Management of Chronic Complications of Sickle Cell Disease
Presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute's Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014

Hydroxyurea and Transfusion Therapy for the Treatment of Sickle Cell Disease
Presented by ASH in 2014, adapted from the National Heart, Lung, and Blood Institute's Evidence Based Management of Sickle Cell Disease: Expert Panel Report, 2014

Download the apps:

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Web version of the apps

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