Survey Draws Raves About MDA Research Reporting

You like us, you really like us! At least, that's the impression we get from nearly 300 Quest readers who responded to MDA's research information survey (vol. 8, no. 2).

The survey asked for your opinions about the research reporting in MDA publications and the MDA Web site; your involvement in neuromuscular disease research; and your attitudes toward some current issues in research.

Many of you were enthusiastic about the way research is presented in MDA's publications, and equally excited about the research itself. Under-standably, you were less supportive of research that raises certain ethical concerns.

Kudos

Nearly 80 percent of survey respondents ranked MDA publications as their top source of research news and information, and an additional 12 percent ranked it as their second preferred source.

"Quest is terrific — keep up the great quality!" exclaimed one respondent.

Some 95 percent of respondents said they always or usually read Quest 'Research Updates,' and 71 percent indicated that they want more updates. Some 75 percent said the research reporting in Quest has just the right amount of detail, but others disagreed. While 20 percent said there's too little detail, 5 percent said there's too much.

One respondent said the magazine has too much "official terminology," and recommended that we publish a story about pain management. On that note, check out "Living With — and Without — Pain."

As for MDA's Web site, only 35 percent of respondents said it's their first or second choice for keeping track of research, and many respondents indicated they don't have access to the Web.

Of MDA's clients with amyotrophic lateral sclerosis (ALS), 91 percent ranked MDA publications as their first or second source for research news, and 100 percent said they always or usually read The ALS Newsletter.

The Inside Track

Most survey respondents reported some level of interest or participation in neuromuscular disease research.

Some 33 percent have communicated with a scientist about neuromuscular disease research and another 42 percent would like to do so. A similar number said they've attended workshops on the topic or would like to.

Only 9 percent of respondents have visited a lab, but a whopping 54 percent expressed interest in doing so. About 29 percent expressed a desire to work in a lab, and 2 percent have actually taken the plunge and toiled over a lab bench. Only 18 percent of respondents have participated in clinical trials, but an impressive 44 percent said they'd like to.

Many respondents' attitudes toward participation in research seemed to echo that of researchers themselves (see "Opening Up the Ivory Tower," vol. 8, no. 2). The overwhelming message: When people with neuromuscular disease get involved in research — whether it's by talking to a researcher or enrolling in a clinical trial — progress toward effective treatment grows by leaps and bounds.

"It's a privilege to be part of research," and clinical trial participants should be considered "invisible warriors," fighting toward a cure, said one respondent.

Full Steam Ahead?

Survey respondents weren't unanimous in their support of research that touches on sensitive ethical issues.

Overall, respondents expressed support for research involving stem cells — 'wildcard' cells that can contribute to the regeneration of a variety of tissues, including nerve and muscle. But while 94 percent favor research on stem cells derived from human adults, only 71 percent support research on stem cells from human embryos (23 percent disapprove, and 6 percent were undecided).

Prenatal testing and the use of animals in research were also somewhat controversial. Some 68 percent approve of prenatal testing for a genetic disease without a known cure; 25 percent disapprove; and 7 percent weren't sure. About 75 percent support the use of animals other than mice in research, while 21 percent disapproved, and 4 percent were undecided.

In general, respondents were optimistic about the potential impact of the Human Genome Project. This government and private effort to identify the full set of human genes is essentially complete, and has found some 30,000 genes. Some 81 percent of respondents expect the project to have a significant impact on neuromuscular disease research, 7 percent doubt its importance, and 12 percent aren't sure what to expect. (For an exciting look at how researchers are already mining data from the Human Genome Project for insights into neuromuscular disease, see 'Fast-Track Pharmacy.')

The one research issue that provoked a nearly undivided response is that of whether more federal funding should be allocated to neuromuscular disease research. Some 96 percent of respondents said "yes" to more federal funding for neuromuscular disease. (See the Washington Report for more information.)