Outcome from 2013 VWG Meeting

 

 

WELCOME:  Dr. Hamzavi

Dr. Hamzavi suggests the following goals for this group:

  • Regular meeting at AAD;

  • Support a worldwide forum for the discussion of vitiligo;

  • Support a patient platform;

  • Develop a roadmap for the cure of this disease. The VWG can serve as a platform for all groups to discuss and to track progress on a cure;

  • Improve funding for vitiligo advocacy and research. Henry Ford Hospital has an active philanthropy unit which is willing to donate its services to create a central system to raising and disseminating funds to assist in research, patient support, patient access, and advocacy.

 

 

MEASURABLE GOALS:  Dr. Abrar Qureshi

 

                                                                         Standardize Outcome Measures                

In the U.S., there is this notion of patient reported outcome (PRO).  PROs are becoming important because patient perceptive is becoming important.

                                                                     Standardize Clinical Research Tools

  • Truth: is what you are measuring getting to the truth of what you would want to measure?

  • Discrimination: does what you’re measuring in your books discriminate with your situation of interest? So with vitiligo, measuring mild vs. moderate vs. severe, is your measure subject to change?

  • Feasibility: one of the most important parts of the OMERACT filter is that it deals with efficiency and applicability. Every workshop uses these filters and we can use something like this or adapt it.

  • Opportunities: When developing these outcomes, it is critical in everything that we are doing as a group to be in a group of pairs.

  • Caution: should be exercised when defining outcomes.  Make sure every single patient is taken care of since the payers and insurance companies use these outcomes almost against us in order to not make payments.

                                                                        Existing Models of Collaboration

Recommendation (Example):

  • Start with an agenda;

  • Develop a workshop to discuss (i.e. Roopal Kundu’s work on quality of life with the VitiQoL) and establish a group of people who focus on the VitiQoL in this particular meeting. VGICC has taken the lead in this area;

  • People in the workshop break down into other breakout rooms to discuss the topic, the pros and cons, and constructively critique;

  • Breakout groups come back together and vote on a number of questions;

  • New direction has been established along with some of the disadvantages, some of the advantages, where we work together and how to create a new tool that will now be validated at 6 or 7 centers.

 

BASIC/TRANSLATIONAL RESEARCH MEASURES: John Harris

 

Basic Science Standards

 Next step: take all this information we now know and move forward. How do we do that? There is essentially three pieces.

  • Deal with the melanocyte stress (which may kick off the process);

  • Autoimmune destruction;

  • Melanocyte regeneration.

It takes all three pieces, not one group can study all three processes so I think that we need to do this as a team. 

Action Item:

  • Create a committee to ensure we develop groups to focus on trigger factor and melanocyte regeneration to supplement immune based groups;

  • Develop a biobank;

  • Develop a standard protocol for storing specimens;

  • Need a clear idea of where funding needs to go and approximate cost of research.                                                         

 

ADVOCATING FOR VITILIGO: Dr. Richard Huggins,  Dr. Ahmed Al-lIssa, Jackie Garner, Gail Zimmerman

                                                                                           

To Industry

Make a list of all patient groups. Document the epidemiology of vitiligo. Groups should set up time w/ policy makers and industry to lobby for better treatments and research which can make these breakthroughs possible. Groups should also raise funds to do messaging about the non-contagious nature of vitiligo. Group can work w/ philanthropy to help raise private funds which can be leveraged for government funds from the USA, Europe and Asia.

To Funding Groups

We have to take baby steps and of course it is going to be slow. We have to build a base and then we go from there.

  • Prevalence research – How common is vitiligo?

  • Patient advocacy & research – How did National Psoriasis build this up?

  • Systemic Associations – What other disorders are associated with vitiligo, and how often?  How did they do this for psoriasis?

 

Patient Support and Education

 We have speakers from inside and outside of Henry Ford Dermatology.

  • Develop a manual on how to create and run a support group;

  • Create a list of active support groups and provide some basic fundraising techniques to help support the meetings of the patient support groups.

 

COORDINATING AND COLLABORATING:  Dr. Henry Lim

 

Ongoing coordination of research activities - VGICC

  • Support the VGICC in disseminating its clinical measures for use in clinical trials and standardization of outcomes;

  • Place the VGICC links and minutes on the VWG website.

Clinicians/Clinical Research Database

  • Create forum at VWG to help groups bring quality of life measures to policy makers, medical societies and patient care groups;

  • Develop a group to bring these tools to the VWG website.

Foundation Support – VRF - Yan Valle

Develop protocol for biobank specific for each country.

Vitiligo Disease Map – Clinuvel – Dr. Philippe Wolgen

Add an industry portion of the VWG to review industry barriers to bringing new drugs to market. This should be presented to VWG so members can help address these barriers.

Patient Support Groups

  • Develop information on starting support groups in other areas;

  • Translate this into languages where vitiligo is felt to be a major public health issue;

  • Place this information on the website along with link to the questionnaire tool.    

Developing a Comprehensive List

Develop a template for clinical trials with key criteria that can be formatted for IRB submission and placed on website.

WEBSITE UPDATE: Dr. Babar Rao, Dr. Davinder Parsad

Dr. Rao is seeking out volunteers to help with the website. Action items will be added to website with each committee. Website can be a reference with links to groups that are doing research, patient advocacy and support group.

COORDINATING BODIES:  Dr. Davinder Parsad, Dr. Iltefat Hamzavi

  • Create a committee to ensure the program is set up to encourage discussion and collaboration;

  • Create a list of groups working on vitiligo research to be added to website.

Interim Meeting:

  • Ensure minutes and links for other meetings are on the VWG website and create/update a calendar of meetings where vitiligo research will be discussed;

  • Work with website committee to create a vitiligo calendar.