Sickle Cell Anemia
What is Sickle Cell Anemia?
Sickle cell anemia is a blood disorder characterized by red blood cells that assume a rigid, sickle shape.
Last updated 30 Nov 2011, 04:24 PM
30 Nov 2011, 04:24 PM
Hey, new to the group:) I'm sure we can all relate here. Explain your situation, vent, inquire:). Let's get this group going! Be blessed.
| Title | Date | Link |
|---|---|---|
| These Patients Had Sickle-Cell Disease. Experimental Therapies Might Have Cured Them. | 02/02/2019 | |
| Could gene therapy cure sickle cell anemia? | 03/11/2019 | |
| Gene therapy targets sickle-cell disease | 04/04/2019 | |
| In A 1st, Doctors In U.S. Use CRISPR Tool To Treat Patient With Genetic Disorder | 07/30/2019 | |
| GBT Snags FDA Approval for First-of-its-Kind Sickle Cell Disease Treatment | 11/27/2019 | |
| A Young Mississippi Woman's Journey Through A Pioneering Gene-Editing Experiment | 12/28/2019 | |
| A Year In, 1st Patient To Get Gene Editing For Sickle Cell Disease Is Thriving | 06/27/2020 | |
| Rivipansel Granted FDA’s Rare Pediatric Disease Designation for SCD | 10/11/2020 | |
| Fulcrum Therapeutics Presents Updated Data On Sickle Cell Disease Program At The 62nd American Society Of Hematology (ASH) Annual Meeting And Exposition | 12/06/2020 | |
| Chiesi Global Rare Diseases Announces FDA Approval of FERRIPROX® (deferiprone) for Treatment of Transfusional Iron Overload due to Sickle Cell Disease | 05/02/2021 | |
| Gap in care, research and funding for rare blood disorder disproportionately affecting Black Americans | 05/09/2021 | |
| Las Vegas woman writes children's book to help people with rare disease | 05/21/2021 | |
| The Integration of Gene Therapy for Rare Disease | 07/30/2022 | |
| FDA approves gene therapy for sickle cell disease: 'One incredible journey of success.' | 12/12/2023 | |
| New way for states to cover pricey gene therapies will start with sickle cell disease | 03/14/2024 | |
| Vertex says Casgevy benefit extends to nearly five years in sickle cell disease | 06/15/2024 |
Clinical Trials
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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Created by Jaquist | Last updated 30 Nov 2011, 04:24 PM
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