GSI Goals

The Global Scleroderma Initiative’s goals encompass finding integrated solutions to the wide range of challenges found in today’s healthcare ecosystem. We are exploring innovative ways to integrate new technologies with treatments, research, patient care, patient quality of life, and the search for a cure for Scleroderma. GSI will also be fostering and facilitating global cooperation between countries and their patient and healthcare communities.  Some of our goals and areas of intended focus are laid out below.

What are some of the technologies the Global Scleroderma Initiative (GSI) would like to explore and facilitate/support?

Better integration of technology with the Scleroderma healthcare ecosystem, accelerating innovation, and new engineering & management methods are the core principles for improving treatments, improving patients’ quality of life, extending life spans, and finding a cure. Key technologies include: artificial intelligence(AI)/machine learning for diagnostics and large-scale bioinformatics (health data mining); 3D printed organs and personalized stem cell lines; nanotechnology; advanced pharmaceutical research; point-of-care lab-on-a-chip diagnostics for faster test results; robotics for limb replacement, assisting in and performing surgeries; low cost genomics and gene editing; patient care and quality of life innovations; better integrated and more user friendly services for patients and medical professionals to improve the healthcare experience, such as online access to records and some health related apps for phones and tablets. Here are a few examples of how the integration of technology and Scleroderma healthcare can improve patients’ lives:

  • 3D Organ Printing: Many Scleroderma patients have multiple organs effected to one degree or another. When an organ goes into failure and a transplant is considered, many Scleroderma patients do not qualify for transplants from other people because of the degree of complications that often arise from putting someone else’s organs in a patient’s body. The body’s immune system sees that other organ as foreign and attacks it, causing rejection. Many patients are too sick to withstand this rejection process and the methods to stop it. Personalized 3D printed organs would be created using the patient’s own stem cells to generated replacement organs that won’t be rejected because it is the patient’s own tissue. This technology has a long way to go before it can be used, but the timeline to its use can shortened by increasing research and improving efficiency in research.
  • Nanotechnology could be used in various ways. One way that has been studied and is beginning to be used in trials is the targeted delivery of medications to specific parts of the body, leaving other parts of the body untouched. Chemotherapy for cancer is a great candidate for this and trials are being done. Another possibility still in its infancy, but being studied, is using nanotechnology to remove scar tissue. But, one problem is that scar tissue grows back. Another study that is in progress may have found a way to repair damage to tissues with the original tissue instead of scar tissue by placing stem cells on a form of mesh and placing the mesh on the damaged tissue, hoping the stem cells will initiate growth of the same tissue it is in contact with. That last piece is the difficult part. We do not yet know how to get stem cells to grow specific organs. More research needs to be done.
  • Robotics: Robotics are already being used to replace limbs, being built to interface with the patients’ nervous systems so they can control the artificial robotic limb with their minds. Exoskeletons are being used to help people walk again. With the loss of limbs not uncommon in Scleroderma patients, these technologies have and will change peoples’ lives. More work needs to be done to improve these products and make them cheaper and more available to more patients.
  • Artificial Intelligence is already selecting personalized treatments for some cancer patients based on their own personal medical history and genetic makeup.

What are some of the patient initiatives GSI would like to address?

  • Patients have no central way to know what is happening in research and treatments in different parts of the world or how to access it. A one-stop-shop for patient focused information, particularly on rare diseases like Scleroderma, is hard to find online or elsewhere. GSI would like to create a patient resource portal online that is available to everyone worldwide showing them the choices they have for treatment and ways to get that treatment.
  • GSI could also build a global network of social workers that can help patients get treatments that may not be available in their home countries.
  • Not enough healthcare workers are aware of the existence of Scleroderma. GSI would like to create a network of healthcare workers around the globe to provide and expand education and training for other healthcare workers to recognize and treat Scleroderma.

What are some of the barriers to research and global cooperation that the GSI would like to address?

  • Government Regulations. Each country has its own rules and regulations when it comes to managing healthcare. Some areas, like sharing medical research and allowing access to treatments from other countries, get caught up in bureaucratic webs. GSI would like to work with global and local health organizations, to work to overcome these regulatory barriers. Organizations like the Scleroderma Foundation and the Scleroderma Research Foundation in the United States, the European League Against Rheumatism (EULAR), the European Scleroderma Trials and Research group (EUSTAR), National Association for LUPUS, APS, Scleroderma and MCTD (NVLE – Netherlands), Komunitas Scleroderma Indonesia, the World Health Organization (WHO), and many more.
  • Governments have generally been the main source of funding for medical and other scientific research but are increasingly leaning on the private sector to add to and fill gaps in the funding basket. GSI will investigate ways to create incentives for governments, the private sector (the tech sector especially), and the medical and research communities to bridge the gaps and create a more symbiotic and efficient system.
  • Knowledge sharing across international borders. GSI would like to increase access to global data on Scleroderma or even create a central repository where all research and information on scleroderma can be accessed. We are also exploring using a AI system to mine globally sourced research and other data and in some cases come up with research opportunities for different research projects that compliment one another and when combined, may be the solution to a problem — a solution that otherwise may have been missed.

How can we improve Scleroderma Awareness?

  • Spreading Scleroderma awareness in the global medical community and providing training resources.
  • Spreading Scleroderma awareness to the general public via social media and other public campaigns, using a network of Scleroderma organizations around the world.
  • Facilitating advocacy in every country to help bridge the geopolitical issues at both the government and grass roots levels to provide more access to all resources to patients anywhere in the world.

If you have any questions or thoughts you would like to share, please contact us.

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