Project ECHO

Project ECHO®
The Ehlers-Danlos Society

About EDS ECHO

Enhancing care for people with all types of Ehlers-Danlos syndrome (EDS) and hypermobility spectrum disorder (HSD) through case-based discussions, sharing knowledge, and expert updates.

EDS ECHO a program for healthcare professionals across all disciplines who want to improve their ability to care for people with EDS, HSD and associated symptoms and conditions.

Project ECHO® addresses population health in a scalable way — moving knowledge instead of patients via telementoring and collaborative care.

The heart of the ECHO model™ is its hub-and-spoke knowledge-sharing networks, led by expert specialist teams. The ECHO model is not “telemedicine” where specialists assume the care of the patient; it is a guided model aimed at practice improvement, in which providers retain responsibility for patients, and gain increasing independence as skills, confidence, and self-efficacy grow.

Illustration of ECHO hub-and-spoke concept

For more about Project ECHO®

Visit echo.unm.edu

EDS ECHO®
An Evolution in Medical Education and Care Delivery

In April 2019, The Ehlers-Danlos Society started the EDS ECHO® program with two hubs, one at Indiana University Health, Indianapolis, IN, USA, and the other at The Royal Society of Medicine, London, UK. Over time, our aim is to open hubs all over the world.

One of our greatest assets is the International Consortium, a group of independent expert clinicians, scientists, and patients from across many specialties. Our medical professional members run the EDS ECHO® program: a rolling program that covers the main aspects of EDS and HSD.

Participants are able to share their cases and questions in the sessions, and are guided to further educational materials and support. CME/CPD credits are available at no charge to participants.

After taking part in the program, participants are invited to join us at any future EDS ECHO® sessions and join the EDS ECHO® Alumni group. We will also help groups to start a program for the care of their patients, expanding the EDS ECHO® network, and bringing care closer to home. For more information click here.

Since its inception, EDS ECHO® has added several new programs to its portfolio. We run programs for clinicians that cover the breadth of EDS and HSD diagnosis and management; a vEDS ECHO dedicated to all aspects of diagnosis and management of vascular Ehlers-Danlos syndrome; an Allied Health Professionals ECHO that is run from 3 sectors around the world; Nurses ECHO for all qualified, practicing community and hospital-based nurses; and, we are looking forward in 2020 to introducing EDS ECHO® programs dedicated to orthopedics, pediatrics, and other rare types of EDS.

In addition, EDS ECHO® is exploring opportunities for providing virtual one-off education meetings such as medical ‘Grand Rounds’, and clinician conferences.

The EDS ECHO® Advocacy program, introduced in 2019, is a seven-week program dedicated to providing the tools one needs to advocate effectively for individuals living with EDS and HSD.

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Three Steps To Join

Please note, participants are permitted to sign up and join the current program before the start of session 3, after which time applications will be closed. You may still sign up at https://ehlers-danlos-society.regfox.com/eds-echo to be placed on the list to request a place on our next program.

1

Please note that we are GDPR compliant. You will be asked to include:

  • The program number for the session you want to attend (see the section “When are the upcoming EDS ECHO Professionals programs?”);
  • Your name, job title, work affiliation, and contact email address;
  • And if joining as a group, each member’s name, job title, work affiliation, and email address.
2

We will reply to confirm your choices, and provide you with the Zoom login information. Submit your case study here.

3

We use the teleconferencing platform ZOOM.

Click on the invitation link / meeting code that we will send you.

You do not normally need to download ZOOM first. It should automatically open up on your system and go straight to the meeting.

Remember to “Allow” ZOOM access to your computer / phone audio and camera.

If you want to check ZOOM works on your system before you start EDS ECHO you can do this for free at ZOOM.us.

ECHO sessions will last approximately 90 minutes.

United States

INDIANAPOLIS
Clinical lead, Dr. Clair Francomano

Thursdays at 5:00 pm
Eastern Time (US)

Spring/Summer 2020Program No. 4A
Week 1May 7
Week 2May 14
Week 3May 21
Week 4May 28
Week 5June 4
Week 6June 11
Week 7June 18
Week 8June 25
Week 9July 2

United Kingdom

LONDON
Clinical lead, Dr. Alan Hakim

Tuesdays at 12:00 pm
GMT (Greenwich Mean Time)

Autumn/Winter 2020Program No. 5B
Week 1September 15
Week 2September 22
Week 3October 6
Week 4October 13
Week 5October 27
Week 6November 3
Week 7November 24
Week 8December 1
Week 9December 8

General structure

Week 1 – Introduction, and making a diagnosis. Part 1 – hEDS and HSD
Week 2 – EDS diagnosis. Part 2 – rare types
Week 3 – Musculoskeletal complications and pain
Week 4 – Neurological complications
Week 5 – Maxillofacial / ENT, Upper Gastrointestinal concerns
Week 6 – Lower GI, inflammation and mast cell issues
Week 7 – Cardiovascular complications and Autonomic dysfunction
Week 8 – Urogynaecology, pelvic floor
Week 9 – Participant topics and next steps

We only ask that you join as many as you can. You can join any of the future sessions in any program. Zoom conferencing login details will be provided when you sign up to join us; please see “How do I join EDS ECHO?”


INITIAL LEARNING MATERIALS

Reading materials are available from The 2017 EDS Classification – American Journal of Medical Genetics Part C: Seminars in Medical Genetics. Videos are available through YouTube.

Week 1 – Diagnosis

Tinkle et alHypermobile Ehlers–Danlos syndrome
Castori et al. A framework for the classification of joint hypermobility and related conditions


Week 4 – Neurological & Pain

Henderson et alNeurological and spinal manifestations of the Ehlers–Danlos syndromes

The Ehlers-Danlos Society has launched EDS ECHO, a program that seeks to support health professionals around the world in caring for those with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). We currently have two hubs, one in the USA and one in the UK. From our hubs, we run 90-minute virtual teleECHO clinics via the Zoom conferencing platform.

Our long-term goal is to expand across the world, creating multiple hubs in different regions in many languages and covering all time zones, removing the barriers for any clinician who wishes to join in and learn about the diagnosis and management of the EDS and HSD.

EDS ECHO can take different shapes and forms according to each group’s needs. We can offer the administrative and clinical expertise to support a program and act as the hub for this, managing the administrative processes, while local clinicians lead the program. Alternatively, we can work with a group to find them a lead and their own local administrative team, supporting them to become an EDS ECHO Hub.

ECHO Options

The frequency and number of sessions in a program is flexible and could run weekly, fortnightly, monthly, or quarterly based on a group’s needs.

Specialty programs are for healthcare professionals with particular expert needs wishing to run specialty meetings, for example surgical disciplines, the rarer types of EDS, Paediatrics, Therapies, Gastroenterology and other medical disciplines.
Cost per session: For those interested in setting up a Speciality EDS ECHO financial support could be provided as part of the existing EDS ECHO funding.

Geographic programs develop existing or establish new networks for clinicians in particular regions or countries, anywhere around the world. These are encouraged to be run in the country’s local language.
Cost per session: $437.50 per session plus an additional $250 per expert per session.

Organization programs are for healthcare organizations such as hospital groups or community clinics wishing to establish multidisciplinary teaching, clinical mentoring and support developing and enhancing their organization’ services.
Cost per session: $437.50 per session plus an additional $250 per expert per session.

Setting up your own EDS ECHO Hub — If you wish to become a full EDS ECHO Hub there is training involved that includes Immersion Training with one of Project ECHOs SuperHubs. We can advise you further on this. Each newly established EDS ECHO hub will work closely with the existing hubs to develop mutually agreed curricula.
Costs: Please contact us to get costs on setting up your own EDS ECHO Hub.

Types of Programs

We currently run two structured concurrent 9-week rolling programs that cover all areas of EDS and HSD — from making the diagnosis to managing the related conditions. The programs are a combination of teaching presentations and case-based discussions. This is one example model, but there are other ways that this could be managed.

Structured sessions cover specific subjects in a pre-planned program over a set period of time. The number of sessions in a structured program is the choice of the program lead(s). This program may be repeated and/or be the initial engagement for the network before establishing longer term regular open sessions.

Open sessions are regular multi-disciplinary team meetings allowing discussion across the breadth of care as issues arise for participants within the group.

Mixed — a combination of Structured and Open.

Cost Breakdown

Depending on the group’s needs for administrative and clinical support the fees per session in US Dollars are:

Administration$32.50 per hour of support required for the whole program, and per session
IT Support$110.00 per session
Hub Facilities$120.00 per hour
Senior Clinical Facilitator$175.00 per session inclusive of preparation (total 2 hours)
Expert Invited Guest$250.00 per guest. Invited guests have the right to donate their fee to The Ehlers-Danlos Society.

Optional recommended addition

Quality Outcome Research: We encourage all programs to engage in the assessment of the educational value, changes to practice, and outcomes for patients. Our researchers and data repository are based at PennState University, USA. We base time commitment per program at a senior Associate Professor level university cost of $675 per day / $85 per hour.


The core team required to manage ECHO sessions includes:

The Administrator — the principal responsibility is setting up sessions, liaising with the nominated lead for the programme, case presenters and the facilitator, supporting spoke individuals and groups with any queries, ensuring the ECHO sessions and participant details are recorded on the iECHO database, and can also support the organization in applying for CME / CPD.

The IT support — principal responsibility is to ensure that the Society’s hub facilitation site equipment is functioning during a session and advise participants on IT issues arising during a session. We can also assist an organization in its preparation for running a program in terms of equipment and software requirements.

The Facilitator — a senior clinician with broad knowledge of EDS will support the development and running of sessions with the clinical lead(s) for the organisation / network, ensure maintenance of clinical governance, equal opportunities for participants, and support of Administration or IT as required.


If you would like to know more about getting involved in EDS ECHO then please contact us here.

EDS ECHO Recordings and Resources

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To view previous video recordings of our Patient Expert ECHO, PP1 sessions please click here

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