Q: Why is NARCOMS asking me about my “worst hand”?
A: The “worst hand” question has to do with hand function, where participants self-report symptoms and disability in their hands. The Hand Function Performance Scale has a mild relationship to the Nine Hole Peg Test, which uses the average speed of both hands.
While it is tempting to describe each hand individually, especially when there are differences in disability when one hand is compared to the other, the instructions ask for you to describe the
1) Consistency: All participants in NARCOMS are being compared in the same manner since everyone is being compared based on the condition of his or her worst hand function.
2) Comparability: When answers are given in a uniform way over time, then hand function is always based on the worst functioning.
Dr. John Rinker, UAB, recently began investigating the effect of tremor in both hands. For more on this story see MS Reflections.
Q: Why haven’t I been asked to participate in any other research projects through NARCOMS?
A: Additional research projects that NARCOMS assists or conducts are targeted to the specific persons of interest for that specific study. You may not have received an offer as part of our efforts not to waste your time in a study that you more than likely won’t meet the criteria to enter.
1) Using existing NARCOMS data. The questions a researcher is interested in may already be included in regular NARCOMS updates. This is why it is so important that we hear from you every Spring and Fall.
2) Including special questions in a regular update. Researchers with a small number of short questions may include them as part of a regular update. Any new or special questions will be highlighted at the start of every regular update and explained here in on the Survey 101 page.
3) A project outside of a regular update. Most of the time, these projects are based on a very specific question and invitations are sent only to participants that have indicated on a regular update that they have a certain condition or a certain level of disability (such as Dr. Rinker’s project, described here).
We enjoy hearing from you. If you have a question or comment, please
email MSregistry@narcoms.org or call toll free at 1-800-253-7884.