Fall 2007 Newsletter

CARES Foundation, Inc.

Results and Findings of the CARES Membership Survey

Recently, the CARES Foundation, Inc. conducted a Membership Survey to help the organization better understand our members’ perceptions and needs. Our goals were:

1. To learn more about who members are and what resources they value.
2. To guide CARES in providing services, education, products and activities that truly meet the needs of members.

The membership survey was offered to certain registered members of CARES Foundation (families and affected individuals only) through the organization's website. The survey was made available from February through July 2007, and members were invited to participate by email and regular mail. The potential survey population was 1534 selected members of which 526 responded for a response rate of 34%.

Key Findings

The response rate was high: over one third of CARES Foundation members responded to the survey. The CARES Foundation membership base seems eager to share opinions about services and programs offered by the Foundation. The survey uncovered key findings within the following areas: membership demographics, organ-izational programs and services, funding priorities and embryonic stem cell research.

Membership Demographics

CARES Foundation survey respondents represented 24 nations, with 89% of the respondents from the United States. Of the members residing in the United States, those from California, Texas and New York represented over 25% of respondents. These three states account for a significant portion of CARES Foundation members. The vast majority (85%) of respondents were female.

Foundation Programs and Services

The survey asked participants to indicate how they became aware of CARES Foundation. The website and various internet-based modes of communication (CAH message boards, chat groups, email listserv) represented the main sources. According to the survey results, the most used services are the website, newsletter and educational materials. The least used services were medical travel assistance, event travel assistance and support groups.

Embryonic Stem Cell Research

Respondents were asked to indicate their support of the embryonic stem cell research for a cure for CAH. The chart (Embryonic Stem Cell Research) below outlines the results of this question. Nearly half of the respondents, 48% (251 respondents) indicated that they support embryonic stem cell research. Another 13% would only support stem cell research if embryo-sparring technique is implemented. Of all the respondents, only 6% did not support embryonic stem cell research. At 18%, nearly one fifth of the survey respondents felt unsure about pursuing embryonic stem cell research. A further 15% left the selection blank, possibly indicating that they felt unsure about this type of research. A conjecture can be made that 1/3 of the survey respondents are unsure about pursuing embryonic stem cell research and 2/3 support it in some capacity.

Funding Priorities

Survey respondents were given the opportunity to select which areas they felt to be the most critical. The five areas to be ranked included:

• CAH research
• education of the public and healthcare professionals about all forms of CAH
• advocacy for universal newborn screening
• support services and resources vital to the CAH community
• public awareness of CAH

According to the survey, research ranked as the most important funding priority followed by education. Advocacy and support were the next most important funding priorities with public awareness being the least important according to the survey results.

International Demographics

Of the respondents, 89% answered that they resided in the United States, while 11% indicated that they lived outside of the United States. The three countries outside of the U.S. with the highest response rates were Canada, Australia and the United Kingdom, which accounted for over 46% of international responses. Small numbers of respondents were from the Bahamas, Chile, Columbia, Dominican Republic, former Yugoslavia, Germany, Greece, Hungary, India, Israel, Italy, Jordan, Mexico, New Zealand, Philippines, Poland, Puerto Rico, the Republic of South Africa, Syria and Uruguay.

United States Demographics

Within the U.S. resident respondent group, 47 states and the District of Columbia were represented. The three states with the highest response rates were California, New York and Texas, which made up over 27% of the national responses.

The membership survey indicated that research for a cure was the highest priority for funding. According to the research results, 48% of respondents felt that CARES Foundation should set research as the top funding priority.

We thank everyone who took the time to fill out the survey. We gained so much useful information from this survey.