Terms of Reference

1. Introduction

The Sickle Cell Retinopathy Network (SCR.net) is a not-for-profit organisation dedicated to reducing the prevalence of vision-threatening complications in individuals with any sickle cell genotype. This Terms of Reference (ToR) document outlines the structure, goals, and operational framework of SCR.net.

To reduce the prevalence of vision-threatening complications in people with any sickle cell genotype.

To highlight the importance of and conduct research aimed at reducing vision-threatening complications in people with any sickle cell genotype. This will be achieved through:

3.1. Global collaboration with multidisciplinary teams in countries and communities with a high prevalence of sickle cell disease.

3.2. Producing robust multicentre research to understand the diagnosis, risk factors, and causes of visual loss in this population.

3.3.  Developing evidence-based screening and management protocols to prevent blindness in individuals with any sickle cell  genotype.

4.1.  Championing Enhanced Ophthalmic Care

4.1.1. Advocate for improved access to comprehensive ophthalmic care for individuals with any sickle cell genotype, globally.

4.1.2. Foster collaboration between ophthalmologists, researchers,  and other healthcare professionals to elevate the standard of care  and improve visual outcomes for patients.

 

4.2.  Enhancing Awareness and Education

4.2.1.  Develop and disseminate educational materials for healthcare professionals (including physicians and caregivers) and patients  regarding the intricacies of SCR.

4.2.2. Organise workshops and training programs to empower healthcare personnel with the knowledge and skills to identify, diagnose, and manage SCR effectively.

 

4.3.  Influencing Resource Driven Policies

4.3.1.  Participate in policy discussions and advocacy efforts to influence healthcare policy decisions Internationally (within High-  Income Countries – HICs, Middle-Income Countries – MICs and  Low-Income Countries – LICs)

4.3.2. Advocate for policies that improve access to affordable and effective SCR screening, diagnosis, and management, ultimately  improving the quality of life for affected individuals.

 

4.4.  Advancing Capacity Building Through Collaborative Research and Partnership 

SCR.net will conduct collaborative research to:

4.4.1 Enhance understanding of the disease process, mechanisms, features, investigations, management, and outcomes of SCR.

4.4.2 Identify risk factors for vision loss in individuals with any sickle cell genotype.

SCR.net will develop and implement capacity-building programs to:

4.4.3 Improve the skills and knowledge of healthcare professionals involved in the care of individuals with SCR.

4.4.4 Contribute to the advancement of scientific understanding of SCR.

4.4.5 Develop innovative approaches to the identification and management of SCR (e.g. culturally appropriate automated algorithms etc)

Membership in the SCR.net is open to individuals and organisations committed to the network’s vision and mission. This includes:

5.1. Healthcare professionals including ophthalmologists, haematologists, physicians, nurses, and wider relevant specialists.

5.2. Researchers and scientists with expertise in sickle cell disease, ophthalmology, haematology and related fields.

5.3. Patient advocacy groups and organisations.

5.4. Any stakeholder involved in improving the lives of individuals affected by SCR, e.g. Policy makers.

6.1. Steering Committee

The SCR.net will be governed by a Steering Committee composed of representatives from various stakeholder groups. 

The Committee will oversee the network’s activities, ensuring alignment with its vision and mission, and making strategic decisions.

6.2. Selection and Term of Steering Committee Members

6.2.1. Steering Committee members will be elected from time to time, initially comprising founding members and a nominated patient representative.

6.2.2. Members will be nominated based on expertise required to achieve the SCR.net’s aims and objectives.

6.2.3. The term of the Steering Committee membership will be 3 years.

6.3. Subcommittees

Subcommittees may be formed as needed to focus on specific areas such as research, education, advocacy, and patient involvement.

7.1. Regular Meetings

The SCR.net will hold regular meetings on-line to discuss ongoing activities, progress and future plans. The meetings will be monthly on the first Sunday of the month but there will be flexibility to change if required.

 

7.2.  Communication Channels

Members will be nominated based on expertise required to achieve the SCR.net’s aims and objectives.

Funding sources for the SCR.net could be as follows:

8.1. Grant applications through appropriate research funding bodies or related organisations.

8.2. Collaboration with governmental organisations and industry partners while maintaining academic integrity.

SCR.net is committed to meaningful Patient and Public Involvement (PPI) in all aspects of its work.

9.1. Our PPI principles are:

  • inclusion
  • belonging
  • transparency
  • collaboration, and
  • empowerment

 

9.2. PPI Activities

9.2.1. Serving on our committees and advisory boards: Patient representatives will have the opportunity to provide input on our research priorities, educational materials, and advocacy efforts from inception to conclusion.

9.2.2. Participating in research activities: We will involve patients and the public in the design, conduct, and dissemination of research findings.

9.2.3. Sharing their experiences and perspectives: We will provide opportunities for patients, families, and caregivers to share their stories and perspectives through workshops, conferences, and online forums.

9.2.4. Participating in educational events: We will encourage patients, families, caregivers, and the public to attend educational events to learn more about SCR and its management.

Key stakeholders include:

  • Patients with sickle cell disease and their families
  • Healthcare providers, including ophthalmologists, haematologists, and primary care physicians.
  • Researchers and scientists in relevant fields
  • Patient advocacy groups and organisations
  • Caregivers and community health workers
  • Government and health service providers

11.1. Policy Influence

SCR.net will endeavour to influence healthcare policies to improve access to SCR care and resources internationally.

 

11.2. Research Initiatives

SCR.net will endeavour to conduct and support research to enhance understanding of SCR and develop effective management strategies.

12.1. Success Factors

  • Achievement of research milestones and publication of findings.
  • Improved patient outcomes and reduced incidence of vision loss due to SCR.
  • Increased awareness and education among healthcare professionals and patients.


12.2. Risks

  • Financial constraints.
  • Non-cooperation from governments and funding bodies.
  • Potential ethical and logistical challenges in research.


12.3 Constraints

  • Limited resources and funding.
  • Variability in healthcare infrastructure and access across different regions.

 

These terms of reference will be reviewed and revised periodically to ensure they remain relevant and effective in achieving the network’s goals.

This document serves as a comprehensive overview of SCR.net’s mission, goals, and operational framework. By adhering to these terms of reference, the network strives to work effectively with its members and stakeholders to achieve its vision of reducing the prevalence of vision-threatening complications in individuals with any sickle cell genotype.

Sickle Cell Retinopathy Network – 7th July 2024