• Research and Resources for Collaboration

  • Network with Adult Sickle Cell Providers

  • Patient Care Resources

  • Education on Clinical Management and Research Opportunities

The Sickle Cell Adult Provider Network (SCAPN)

The Sickle Cell Adult Provider Network (SCAPN) was established in 2002 with a mission to establish and support an interactive network for healthcare providers and investigators who serve adults with sickle cell disease.  This was the first, and remains the only, national organization that offers a home for healthcare professionals from multiple disciplines who focus on adult-oriented research, clinical care, provider education/training, mentorship and advocacy in sickle cell disease.

News

By: Jonca Bull, M.D.

The FDA has launced a campaign to encourage minorities to participate in clinical trials for all medical conditions.

Jonca Bull, M.D., is Director of FDA’s Office of Minority HealthThe first part of the campaign will be launched on June 19, 2016, World Sickle Cell Day, observed annually to help increase public knowledge and raise awareness of Sickle Cell Disease, which primarily affects people of African and Hispanic descent. We want to encourage diverse communities to learn more about how they can become a part of the research process to bring new therapies to the market.

Clinical trials are a critical step in making new medical products available. Medical products—from vaccines to drugs for blood pressure or diabetes management — are tested in clinical trials.

Although FDA generally does not conduct clinical trials, we do the critical work in reviewing the data to assess the safety and efficacy of medical products before they can be used in medical practice. None of this is possible without clinical trials and the patients who go the extra mile by being research participants.

In order to help ensure that medical products are safe for everyone, we need a diverse pool of research participants—racial and ethnic minorities, women, even the elderly.

We know that certain diseases impact some populations differently. For example, diabetes occurs  more frequently in blacks and Hispanics, high blood pressure and heart failure occurs more frequently and severely in blacks; and, Asian American communities experience more hepatitis B.

Clinical trials participants need to more closely mirror the patients who will ultimately use the medicine. This is especially important when considering health disparities — diseases that occur more frequently or appear differently in non-white populations. But most clinical trials participants are white and male. That means we may miss vital data that could be used to be make better evidence-based, regulatory decisions. If we do not develop a more diverse pool of research participants, health disparities may persist because we will not know if a medical product is safe and effective in the actual population that will ultimately use it.

Our campaign includes a series of educational aids such as videos, a blog, and an infographic.  Please click on the link for more information.  https://www.fda.gov/downloads/forconsumers/byaudience/minorityhealth/ucm506981.pdf

 

 

 

 

 

 

 

 

 

Events

Duke School of Nursing Sickle Cell Disease Conference - Duke University - Durham, NC - October 6-7, 2017

Sickle Cell Disease Association of America (SCDAA) National Convention - Atlanta, Ga. - October 26 -28, 2017

11th Annual Sickle Cell in Focus - Kingston, Jamaica - October 26-27, 2017

3rd Annual Sickle Cell Symposium - Carolinas Healthcare System - Concord, NC - October 28, 2017

American Society of Hematology - 59th Annual Meeting - Atlanta, Ga. - December 9 -12, 2017

 

 

 

 

 

 

 

 

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  • NEXT SCAPN MEETING

    American Society of Hematology

    ASH 59th Annual Meeting 2017

    December 9 - 12, 2017

    Georgia World Congress Center

    Atlanta, GA

     

     

     

     

  • Welcome to SCAPN.net

    We are excited to launch our new website!  A big thank you to the Doris Duke Foundation.  We are now a 501(c)3 organization that facilitates Research, Networking and Resources for Health Care Providers of Sickle Cell Adults!  We welcome you to visit the site and become interactive with us.

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