• 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

 

 

Re: Coronavirus and Sickle Cell Disease (SCD) reporting registry

 

Dear Colleagues,

 

Given the interest in the emerging and evolving coronavirus (COVID-19) epidemic and the questions regarding how this will impact patients with sickle cell disease (SCD), we decided to create a secure, online, de-identified Personal Health Identifier (PHI)-free reporting registry.  We encourage SCD clinicians worldwide to report ALL cases of COVID-19 in their SCD patients, regardless of severity (including asymptomatic patients detected through public health screening).  Reporting a case to this Surveillance Epidemiology of Coronavirus) Under Research Exclusion (SECURE)-SCD registry should take approximately 5 minutes.  With the collaboration of our entire SCD community, we will rapidly be able to define the impact of COVID-19 on patients with sickle cell disease and understand the impact of risk factors such as genotype, prior sickle cell disease complications, or sickle cell disease related medications, on health outcomes.

 

Key points:

  1. This is an international effort—we are counting on robust participation and collaboration.
  2. On the project website, https://covidsicklecell.org/, we will provide regularly updated summary information about reported cases, including numbers of cases by country, number of cases by treatment, etc. so the entire SCD community has access to these data.
  3. The registry contains only de-identified data, in accordance with HIPAA Safe Harbor De-Identification standards
  4. The Medical College of Wisconsin Human Research Protection Program has determined that storage and analysis of de-identified data does not constitute human subjects research as defined under federal regulations [45 CFR 46.102] and does not require IRB approval. We hope you will actively contribute to this voluntary reporting system.  Through broadscale participation and collaboration, we will be able to answer these very pressing questions for our SCD patients and their caregivers.

To report a case of coronavirus, please visit https://covidsicklecell.org/ 

 

If you have any questions, please reach out to Covid.sicklecell@mcw.edu

 

In addition to the reporting cases of COVID-19 to SECURE-SCD, we also encourage reporting to your local public health agency where applicable.

 

Sincerely,

 

Julie A. Panepinto, MD, MS (Pediatric Hematology, Medical College of Wisconsin)

Amanda M. Brandow, DO, MS (Pediatric Hematology, Medical College of Wisconsin)

Ashima Singh, PhD (Epidemiologist, Pediatric Hematology/Oncology/Bone Marrow Transplantation, Medical College of Wisconsin)

 

 

 

 

Events

Some events have been canceled or rescheduled due to the Coronavirus!  Please check with the hosts.

June 12-14, 2020 - 14TH Annual Sickle Cell Disease Research & Educational Symposium - Fort Lauderdale, FL

August 10 - 13, 2020 - Annual Sickle Cell Disease Research Meeting - Natcher Conference Center - NIH Campus - Bethesda, MD.

September 12, 2020 - 6th Annual Sickle Cell Disease Symposium - Atrium Health - Charlotte, NC

October 13 - 17, 2020 - Sickle Cell Disease Association of America, Inc. (SCDAA) - 48th Annual National Convention - Orlando, Florida

 

 

  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

  • UPDATE YOUR PROFILE

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  • Having Technical Issues?

    If you encounter problems trying to log in to the website, please email us at support@scapn.net and let us know. We're here to help!

  • SCAPN MEETING

    The next SCAPN meeting will be held at the Annual SCD Research Meeting at the NHLBI - August 10 - 13, 2020

    Nather Conference Center on the NIH Campus - Bethesda, MD.

     

     

  • 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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  • JOIN OUR EMAIL LIST

    Click here to become a member and stay informed of all the upcoming news and events.   SCAPN is a 501(c)3 and all donations are tax deductible.