One advocacy role of groups acting on behalf of specific disease populations has been to communicate information and stimulate interest in clinical research participation. HDSA utilizes printed newsletters, national and local websites, teleconferences, and annual meetings at both the national and field/chapter levels. HDSA has worked closely with HSG to provide education during annual workshops, and through local chapters and affiliates at individual investigator sites. However, it is unclear how information from HDSA or other disease advocacy organizations translates to clinical research participation.
The advocacy role of individuals in clinical trial recruiting is less well defined, and as discussed in a Hastings Center Review, has been quite varied 
. Individual advocates have served as surrogate decision makers for mentally impaired individuals 
and have assisted investigators with trial design or consenting procedures 
. In each of these cases advocate roles are defined by parent research facilities.
The role of individual community advocates specific to the recruiting process varies with the disease organization. Parkinson’s Disease Foundation, the North Central Cancer Group, and the Vanderbilt-Ingram Cancer Center have initiated in-person community advocate training programs to assist with recruiting efforts that range from half-day to three day intensive training sessions 
. HDSA has recently implemented a Diplomat program that utilizes webinar training of volunteers and provides written materials for use at educational gatherings and support groups 
. However, it is unclear how any of these programs define advocate roles or responsibilities, nor has there been reporting of outcomes based on these programs.
To our knowledge the Evergreen experience is the first reported outcome study of advocate recruiting for any disease. We believe that several factors contributed to the positive outcome at the local level: (1) the establishment of partnering roles between site investigators and community advocates (2) relatively high advocate knowledge of the HD clinical research process served to validate the advocate role on both sides of the process, between site and advocate, and between advocate and local HD families, and (3) previous community familiarity and trust developed for local advocates.
The Evergreen experience also shows the important recruiting power of web-based dissemination of information. The collaboration with HDSA was a vital contributing factor, at both the national and Northern California level. An important contribution was made by smaller web-community sites.