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  Objectives of CONECT:
  1.   Build a network of ATS, Marfan Syndrome, Cutis Laxa, Loeys-Dietz, and other similar rare stakeholders       interested in cross-cutting potential collaboration in programs and research.
  2.  Address similarities, determine what is essential to our patient populations, and what the patients need  to learn that would lead to improvement of their quality of life:
The patient aspect of this project is to enable patients to interact appropriately with the clinicians and caregivers to evaluate treatment options and make informed decisions. For that purpose, patients need to be fully informed of the challenges they will face in the course of their lives at the clinical level and quality of life level, and the natural history of their disease (if available). In ultra-rare diseases, patients are often the first face of the disease that the clinicians encounter; thus, the patients have to be able to give knowledgeable information to the doctors. To create an efficient patient education platform, we need to address the low volume of patients and want to group the different rare diseases involving connective tissue genetic disorders. Then we want the patients through discussions, panels, surveys, and meetings to determine the common manifestations and the typical day-to-day health concerns. The support and respectful interactions with clinicians will help in the process. The identification by the patients of the most critical common manifestations for the patients and the challenges patients face will drive the new potential collaboration subjects specific for the connective tissue disease population.
  1. Identify the cross-cutting clinical challenges that compromise patient’s quality of care
  2. Discern patient related questions pliant to programmatic future studies
  3.  Identify, through patient-clinicians co-learning, technical challenges specific to caregivers and clinicians in the scope of the platform. 
  4. Establish guidelines to disseminate and continue stakeholder engagement for similar rare disease groups.  
  5. Create the structure of the unified platform of dissemination  
  6. Recruit stakeholders’ participants that will address the patient engagement questions actively disseminate knowledge. 
  7. Create the first round of resources to disseminate to test the new capacity and efficiency:
The first two patient education interactive webinars will be performed as pilots to make a SWOT analysis of the format of dissemination and analyze the reach and retainment of the dissemination tool.  This must be done in order to know where overlap is and where there is a deficient of pertinent information  between the similar conditions. Interactive webinar #1 will disseminate the results and analysis of the virtual convening and survey happening in project year 1, and that would have identified the cross-cutting manifestations and major issues for the patient’s quality of life and care. It will be held in the 3rd month of the project’s second year. The second patient education interactive webinar content will be decided by the team project based on the analysis of the patients’ convening.
    8. Conduct a clinical literature review on the unified rare disease manifestations, and cross-cut the results to identify the main streams. The compiled information will determine the primary themes of a virtual convening of the unified communities.
Virtua Meeting:
 
Expected Project Outcomes and Impact
 
This partnership will address the common limitations and challenges among the stakeholders under the impulse and guidance of patients and set the stakeholders-informed PCOR priorities in PCOR-CER that conform to PCORI's funding model and guiding legislation. 
 Short term: 
  • Create a robust platform for multi-stakeholder engagement with similar conditions to ATS to foster the creation of PCOR priorities.  
  • Format and organize a virtual convening engaging all stakeholders to explore and cross-cut the patient information needed to answer the challenges and make proper medical decisions. 
  • Create a partnership and disseminating platform, including interactive webinars and a hotline to share the observations and information. 
  • The impact on the patients' interaction with caregivers and clinicians will be more efficient management of their disease.
  • The quality of clinical care will improve.
Medium-term: 
  • The CONECT platform will be operational, and the observation of clinicians' responses to patients' information needs and novice clinicians' challenges will drive the content and dissemination. 
  • The interactivity of the model will allow readjusting the focus of cross-sectional issues in similar rare communities to address patient needs to evaluate PCOR priorities and lead to CER studies.
  • The platform will have a direct impact on awareness in the clinical community and an indirect impact through the increased ability of the patients to advocate.
Long term: 
  • The CONECT platform webinars and masterclasses could be used as a model for other teams when developing partner training or offered to partners focusing on research in this specific area of research.  
  • Implement CER studies, 
  • New information generated from the CONNECT-triggered CER studies will lead to more information on the rare diseases, leading to a stronger rare community that can make more informed decisions on their health care and increasing quality of life. 
 2022
*First Patient Panel virtual meeting, January 21st. 
Video 1: CONECT – Cross-Cutting Symptoms and Their Daily Impacts
https://youtu.be/rsy5eosD4wQ
 
*Second Patient Panel virtual meeting, February 4th.
Video 2: CONECT - Current and Future Treatments Burden
https://youtu.be/tTtexALOT0M 

*Third Patient Panel Virtual meeting, Feb 18th.
Video 3: CONECT – Patient and Clinician Collaboration
https://youtu.be/FSrrOwH4PhE

*The virtual Patient-centered-clinical meeting is TBD.

2023
*Operate the first patient information interactive webinar Date TBD
*Operate the first Masterclass webinar, Date TBD
*Operate the 2nd patient information interactive webinar.
*Operate the 2nd Masterclass webinar.
*Operate the 3rd patient information interactive webinar. *Operate the 3rd Masterclass webinar.

This project is brought to you by A Twist of Fate-ATS and it's partner patient groups, stakeholders, and PCORI. 

If you have one of these rare conditions, this survey is IRB reviewed and takes about 15 minutes.  You will not be contacted about your answers or have identifiable information other the area that you are from.  We want to know what you feel about your symptoms, medications to treat the symptoms, how you feel as a patient that your specialists understand about your condition, and we would also know if there is not a current treatment, what would you do for a treatment?

CONECT SURVEY LINK:    Click HERE To Participate                                        
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Other Partners:

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Arkansas CHD Coalition is a network of Congenital Heart Defect patients (of all ages), their parents, families, and medical care providers here in Arkansas bonding together to help support each other; to support other organizations with similar goals; and to organize awareness and fundraising events for CHD causes. We provide a venue in which to connect and share our cause, information and suggest...ions across the state. We also strive to provide awareness and education regarding Congenital Heart Defects: the needs, the struggles, the joys, and the future

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The goal of Greyson's Advocates is to provide information and materials to families of children facing significant medical diagnoses or extended hospital stays in an effort to allow them to focus on being advocates for their children. This will primarily be achieved through distribution of the Greyson's Advocates Medical Journal and hospital gift bags. The Medical Journal will help families keep all relevant medical information in one location, and provides a historical record of a child's medical procedures. Hospital gift bags will include toiletries, snacks, and other items which may be useful to families while in the hospital. When possible, Greyson's Advocates will connect families with other organizations that may be able to help with their specific needs.
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