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The participants are required to attempt the given discussion questions (using an online forum) after attending the associated online webinar:
- How is newborn screening important in early detecting SCD and other related disorders?
- How is early detection of SCD through newborn screening helpful in preventing complications, improving outcomes, and reducing mortality rates?
- What are the guidelines, protocols, technologies, and methodology used for SCD screening?
- What are the common challenges associated with newborn screening in SCD? What strategies can be implemented to overcome these challenges?
- What is the role played by policy advocacy and public educational campaigns in enhancing newborn screening programs?
Comments
Jennifer Hahn replied on Permalink
1. How is newborn screening
1. How is newborn screening important in early detecting SCD and other related disorders?
Newborn screening helps find serious health conditions like Sickle Cell Disease (SCD) right after a baby is born—before symptoms even appear. Catching it early allows doctors to start treatment quickly, which can save the baby’s life and help them stay healthy.
2. How is early detection of SCD through newborn screening helpful in preventing complications, improving outcomes, and reducing mortality rates?
Finding SCD early lets doctors:
Start medicine (like penicillin) to prevent deadly infections.
Give vaccines early to protect the baby.
Teach parents how to avoid health problems.
As a result, children live longer, have fewer hospital visits, and can lead healthier lives.
3. What are the guidelines, protocols, technologies, and methodology used for SCD screening?
Guidelines and protocols:
All newborns are tested (usually within 24–48 hours of birth).
If the test is positive, more tests confirm the result.
Families are informed, and care begins quickly.
Technologies/methods:
A few drops of blood are taken from the baby’s heel.
The blood is tested using tools like:
Isoelectric focusing (IEF)
High-performance liquid chromatography (HPLC)
DNA testing (for confirmation)
These tests look for abnormal hemoglobin (the protein in red blood cells).
4. What are the common challenges associated with newborn screening in SCD? What strategies can be implemented to overcome these challenges?
Challenges:
Delayed test results.
Lack of follow-up or treatment after a positive test.
Poor communication with families.
Limited resources in some areas or countries.
Strategies to overcome them:
Use digital systems to track results and follow-ups.
Train more healthcare workers.
Educate parents about what screening means.
Provide funding and support for testing and care.
5. What is the role played by policy advocacy and public educational campaigns in enhancing newborn screening programs?
Policy advocacy:
Pushes governments to make screening mandatory and well-funded.
Ensures equal access for all babies, regardless of where they live.
Public education:
Teaches parents and communities why early screening is important.
Builds trust in the health system.
Encourages families to seek care and follow medical advice.
Together, these efforts make sure more babies are tested and get the care they need early on.
Jennifer Hahn replied on
Jennifer Hahn replied on Permalink
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Jennifer Hahn replied on
Muskan Khan replied on Permalink
1.Newborn screening is
1.Newborn screening is crucial for early detection of SCD and related disorders, allowing for timely intervention and management. Early diagnosis can lead to better health outcomes by initiating preventive measures before symptoms develop.
2. Early detection through newborn screening helps prevent complications such as infections, pain crises, and organ damage. It improves long-term outcomes and reduces mortality rates by enabling early treatment and monitoring.
3. Guidelines typically recommend universal newborn screening using methods like hemoglobin electrophoresis or high-performance liquid chromatography (HPLC). These technologies accurately identify abnormal hemoglobin variants associated with SCD.
4. Challenges include limited access to services, cultural barriers, and financial constraints. Strategies to overcome these challenges involve expanding access to screening, increasing public awareness, and providing education about the importance of follow-up care.
5. Policy advocacy can help establish mandatory screening programs and secure funding. Public educational campaigns raise awareness about the benefits of newborn screening, encouraging participation and compliance with follow-up care.
Muskan Khan replied on
Aryia Ried replied on Permalink
Newborn screening helps find
Aryia Ried replied on
Rebecca Kumar replied on Permalink
1. Why is newborn screening
1. Why is newborn screening important for detecting SCD and related disorders?
* Newborn screening is essential because it helps identify sickle cell disease (SCD) and other related disorders early, even before symptoms appear. Early identification allows doctors to start treatments that can prevent serious complications and help babies lead healthier lives.
2. How is early detection of SCD helpful?
* Prevents complications: Early treatment can reduce painful crises, stroke, and infections.
* Improves outcomes: Babies can get vaccines, antibiotics, and early care to stay healthy.
* Reduces mortality rates: Detecting SCD early helps reduce the risk of serious health problems and death by providing immediate care.
3. What are the guidelines, protocols, technologies, and methods used for SCD screening?
* Guidelines: Universal newborn screening is recommended for all babies.
* Protocols: Blood samples are taken after birth (usually within 24-48 hours).
* Technologies: Hemoglobin electrophoresis or HPLC (High-Performance Liquid Chromatography) tests are used to identify abnormal hemoglobin.
* Methods: Screening looks for hemoglobin S (HbS) to diagnose sickle cell disease.
4. What are the challenges with newborn screening for SCD, and how can they be overcome?
*Challenges:
Limited access: Some areas don’t have screening programs.
Lack of education: Families may not understand the importance of screening and follow-up.
Financial barriers: Some places can’t afford the resources needed for screening.
*Solutions:
Improve access: Expand screening to all areas.
Community education: Teach families about the importance of screening and treatment.
Increase funding: Ensure governments provide enough money to cover screening costs.
5. What role do policy advocacy and public education play in improving newborn screening?
* Policy advocacy: Helps create laws that make screening programs mandatory and funded in every region.
* Public education: Raises awareness, so families understand why screening is important and how to access care.
Rebecca Kumar replied on
Adrienne Barfield replied on Permalink
1. Reduces mortality rate2.
1. Reduces mortality rate
2. Infection prevention, stroke prevention, better quality of life
3. SCD screening follows evidence-based protocols supported by advanced laboratory methods and public health infrastructure. These efforts ensure early detection, confirmatory diagnosis, and rapid intervention, which are key to reducing morbidity and mortality in affected children.
4. Limited access to screening services, Missed Diagnosis or Delayed Diagnosis, lack of awareness and education, financial constraints, lack or resources, and inadequate workforce training.
5. Policy advocacy and public educational campaigns are critical pillars in enhancing and sustaining effective newborn screening programs for Sickle Cell Disease. Their impact spans from shaping legislation and securing funding, to raising community awareness, increasing screening uptake, and promoting equity in healthcare.
Adrienne Barfield replied on
Kassie Abbott replied on Permalink
Newborn screening helps find
Kassie Abbott replied on
Jesseca Anthony replied on Permalink
Newborn screening helps find
Jesseca Anthony replied on
Krystle Watson replied on Permalink
Newborn screening is a cost
2. Early newborn screening transforms SCD from a high-risk, potentially fatal disease into a manageable chronic condition by enabling preventative care, early treatment, and ongoing monitoring, all of which reduce complications and mortality.
3. Guidelines: NBS, CDC, NHLBI there goal is early identity of SCD, Protocols: sample collections, initial screening, confirmatory testing, F/U, Methodology: HPLC,IEF, CE, HEMO-ELECTROPHORESIS, point of care
4.limited access, delayed or missed diagnosis, poor F/U lack of care, educational barriers... improving all of the above and them some
5. Policy advocacy and public educational campaigns play crucial roles in enhancing newborn screening (NBS) programs for Sickle Cell Disease (SCD) by creating supportive environments, increasing awareness, and ensuring sustainability
Krystle Watson replied on
Donnique Smikle replied on Permalink
newborn screening is vital
Donnique Smikle replied on
Danielle Verity replied on Permalink
How is newborn screening
Danielle Verity replied on
Ashley Staley replied on Permalink
1. Newborn screening is
1. Newborn screening is essential for early detection because symptoms usually do not appear until after 6 months. This allows for early diagnosis/intervention and it helps detect other hemoglobinopathies.
2. prevents life-threatening infections, reduces mortality rates, improves clinical outcomes, supports parental education/awareness.
3.
Guidelines/Protocols:
Technologies/Methodologies:
Isoelectric focusing, high-performance liquid chromatography, DNA-based testing, mass spectrometry
4. Challenges: limited access, delay in confirmatory testing, lack of awareness, inadequate tracking systems, cultural/language barriers, funding constraints
Strategies: improve communication / tracking systems, expand education programs, strengthen healthcare infrastructure, public-private partnerships, mobile health units/telemedicine, mandatory screening legislation
5. Policy advocacy: legislation for universal screening, funding support, insurance coverage, standardized national guidelines
Public education campaigns: raise awareness among communities, combat misconceptions and stigma, encourage testing/genetic counseling, promote community involvement.
Ashley Staley replied on
Susan Hubbard replied on Permalink
Early detection is key for
Early detection is key for early treatment for all health issues to include SCD.
Early detection will also improve outcomes with the proper treatment.
Newborn Screening that is taken from the baby’s blood from a heel stick within 24 to 48 hours is mandatory in all the hospitals I’ve worked in.
Challenges for newborn screening have been somewhat alleviated. Test results are sent to pediatricians, and then the parents of the newborns are contacted. The problem comes with parents, changing pediatricians and or lack of information or education of what the test results mean and next steps.
Susan Hubbard replied on
Susan Hubbard replied on Permalink
I already commented…
I already commented…
Susan Hubbard replied on
Susan Hubbard replied on Permalink
Comment
Comment
Susan Hubbard replied on
Princess Walker replied on Permalink
1.Newborn screening is
1.Newborn screening is crucial for early detection of SCD and related disorders, allowing for timely intervention and management. Early diagnosis can lead to better health outcomes by initiating preventive measures before symptoms develop.
2. Early detection through newborn screening helps prevent complications such as infections, pain crises, and organ damage. It improves long-term outcomes and reduces mortality rates by enabling early treatment and monitoring.
3. Guidelines typically recommend universal newborn screening using methods like hemoglobin electrophoresis or high-performance liquid chromatography (HPLC). These technologies accurately identify abnormal hemoglobin variants associated with SCD.
4. Challenges include limited access to services, cultural barriers, and financial constraints. Strategies to overcome these challenges involve expanding access to screening, increasing public awareness, and providing education about the importance of follow-up care.
5. Policy advocacy can help establish mandatory screening programs and secure funding. Public educational campaigns raise awareness about the benefits of newborn screening, encouraging participation and compliance with follow-up care.
Princess Walker replied on
Princess Walker replied on Permalink
1.Newborn screening is
1.Newborn screening is crucial for early detection of SCD and related disorders, allowing for timely intervention and management. Early diagnosis can lead to better health outcomes by initiating preventive measures before symptoms develop.
2. Early detection through newborn screening helps prevent complications such as infections, pain crises, and organ damage. It improves long-term outcomes and reduces mortality rates by enabling early treatment and monitoring.
3. Guidelines typically recommend universal newborn screening using methods like hemoglobin electrophoresis or high-performance liquid chromatography (HPLC). These technologies accurately identify abnormal hemoglobin variants associated with SCD.
4. Challenges include limited access to services, cultural barriers, and financial constraints. Strategies to overcome these challenges involve expanding access to screening, increasing public awareness, and providing education about the importance of follow-up care.
5. Policy advocacy can help establish mandatory screening programs and secure funding. Public educational campaigns raise awareness about the benefits of newborn screening, encouraging participation and compliance with follow-up care.
Princess Walker replied on
Lissy Prieto replied on Permalink
1. Importance of newborn
1. Importance of newborn screening for early detection:
Newborn screening allows early identification of SCD and related disorders before symptoms develop, enabling timely preventive care and treatment.
2. Benefits of early detection:
Early detection through screening helps prevent serious complications (like infections and stroke), improves long-term health outcomes, and reduces mortality by starting interventions early.
3. Guidelines and methods for SCD screening:
Screening uses techniques like hemoglobin electrophoresis, isoelectric focusing, or HPLC, following standardized protocols for universal newborn screening soon after birth.
4. Challenges and strategies:
Challenges include limited access, cultural barriers, and financial constraints. Strategies to overcome these include expanding access, community engagement, education, and funding support.
5. Role of policy advocacy and education:
Policy advocacy promotes mandatory universal screening laws and funding, while public education raises awareness, encouraging participation and follow-up.
Lissy Prieto replied on
LaToya Jones replied on Permalink
1. Reduces mortality rate2.
1. Reduces mortality rate
2. Infection prevention, stroke prevention, better quality of life
3. SCD screening follows evidence-based protocols supported by advanced laboratory methods and public health infrastructure. These efforts ensure early detection, confirmatory diagnosis, and rapid intervention, which are key to reducing morbidity and mortality in affected children.
4. Limited access to screening services, Missed Diagnosis or Delayed Diagnosis, lack of awareness and education, financial constraints, lack or resources, and inadequate workforce training.
5. Policy advocacy and public educational campaigns are critical pillars in enhancing and sustaining effective newborn screening programs for Sickle Cell Disease. Their impact spans from shaping legislation and securing funding, to raising community awareness, increasing screening uptake, and promoting equity in healthcare.
LaToya Jones replied on
Karlene Maragh replied on Permalink
1) How is newborn screening
1) How is newborn screening important in early detecting SCD and other related disorders?
-allows identification of affected infants shortly after birth
2) How is early detection of SCD through newborn screening helpful in preventing complications, improving outcomes, and reducing mortality rates?
-proactive management before serious complications arise
3) What are the guidelines, protocols, technologies, and methodology used for SCD screening?
-Guidelines include screening with 24-48 hours with a heel prick. Protocols include universal screening, referral for treatment and immunization. Technologies and methods include HPLC and DNA testing.
4) What are the common challenges associated with newborn screening in SCD? What strategies can be implemented to overcome these challenges?
limited access in rural/underserved areas, low awareness and cultural stigma, financial and resource limitation, poor follow-up and referral systems
5) What is the role played by policy advocacy and public educational campaigns in enhancing newborn screening programs?
Policy advocacy ensures that screening programs are supported, funded and standardized. Public education helps increase awareness and participation.
Karlene Maragh replied on