Chiari 1000 Registry Frequently Asked Questions

What does participation involve?

Completing a questionnaire that asks about your Chiari diagnosis, symptoms, related diagnoses, surgical history and quality of life. If you are a parent and your child is over the age of 8 completing brief surveys about memory, pain, depression, and coping with illness. We also ask that you submit to us your pre-surgery MR images (and post-surgery if you have them) either by postal mail or by an online file sharing website. The questions will take about an hour. You may contact Dorothy Loth, 330-972-5714, chiari@uakron.edu, if you have questions or difficulty either with the questionnaires or with sharing your MR images.

How do I participate?

Click on the Register button, read the details about the study and click to agree to participate, complete the online forms on this website, and upload your MR images.

How many people will be participating?

At least 1000 people will be participating in the Chiari 1000 Registry study. Each one is important because everyone’s experience is unique.

How long will it take to complete my participation?

The forms take about one to one and a half hours to complete. You will be asked to provide the MR digital image of your head by postal mail or using an online file share site such as Dropbox, OneDrive, or Apple iCloud, etc. Your data may take from 15 minutes to up to an hour or two to transfer depending on your Internet upload connection speed.

Can I participate for my minor child?

Yes. Please answer the forms from the perspective of your child. If your child is age 8-17 we will ask them to read an age appropriate assent form that explains the study to them and ask that they agree to the research as well. If your child is age 12-17 we ask that they complete a memory test on their own without your help.

How do I get my MR images from my medical center?

Contact the Department of Radiology at the Hospital/Center where the MR was performed. If this is difficult, contact the Office of Medical Records or Office of Health Information Management.

Complete their Authorization for Release of Medical Information form. These may often be obtained from the organization’s website or they may mail you one.

Indicate you would like a copy of the pre-decompression surgery (and post-surgery, if applicable) MR image of the head. You will need to provide general dates.

They may want a photo ID and date of birth.

Request the image be sent to:

Conquer Chiari Research Center
264 Wolf Ledges Pkwy #211
Akron, OH 44325-0406

Questions or need help? Call:

Dorothy Loth
Project Manager
Conquer Chiari Research Center
330-972-5714

Can I participate without providing my MR images?

Yes. While completing the online forms are a great way to help, providing your MR images as well is the best way to help further research at the Conquer Chiari Research Center. T-shirts are only given to those who complete the online forms and provide MR images.

What are the different ways I can provide my MR images?

Share your images using an online file-sharing site such as Dropbox, OneDrive, Apple iCloud, or any that you prefer.

Postal mail. Mail the DVD with your pre-surgery (and post- surgery if available) to:

Dorothy Loth, Project Manager
Department of Psychology
The University of Akron
Akron, OH 44325-4301

Is this different from the Conquer Chiari Registry I participated in in the past?

Yes, this is a new initiative to gather standardized data from a large number of Chiari patients. Some of the questions are duplicated from the last registry study but we are gathering many new types of information as well. If you completed the previous registry please consider participating in the Chiari 1000 as well.

Who do I contact if I have questions about my participation?

For most questions you can contact Dorothy Loth, Project Manager, 330-972-5714.

For questions about your rights as a research participant, you may call the University of Akron IRB at (330) 972-7666. This is a group that protects the rights of research subjects.

For any other questions contact Francis Loth, Principal Investigator, 330-972-6820.

If you feel the need to speak with someone about your feelings after completing the form you may speak with Dr. Phil Allen, a Psychologist working on this project. Dr. Allen can be reached at 330-972-6177.

Can I read the consent form again?

Yes, login to the website using your email and Password. You will find a button at the top left of the page called “Consent Forms”.

Are there other projects I can participate in?

Yes. Once you finish the Registry forms you will be presented with a list of ongoing studies you may be eligible for. You can choose to be enrolled in the ones you are interested in.

Are there minimum computer requirements?

You will need access to the Internet.

Can you help me with my Chiari problems?

Because this is a research project, we are unable to answer individual questions about treatment and symptoms. You may find this website a valuable source of information: www.conquerchiari.org

Do I have to finish all forms at once?

No. You may stop, logout, login again and continue as many times as you like. Most of the forms are only 5 minutes long. You must complete a form and hit “Submit” before logging out for that form’s data to be saved.

Will the data be anonymous?

The data will be maintained anonymously. However, your identifying information will be retained and linked to your data with a code that is only accessible to the investigators.

Does it cost anything to participate?

No.

Is there any compensation for participating?

No. However, once you complete all the online forms and we have received your MR images we will mail you a specially designed t-shirt to the address you provided at registration.

What happens to the information I provide?

The information you provide will be entered into a computer data bank for use by researchers. Researchers describe their findings in articles that are published in medical journals and in presentations at national and international meetings. That way, all doctors who treat Chiari are able to receive the benefit from the research. What they learn will help them to provide better medical care to people with Chiari and similar medical conditions.

What if I change my mind and don’t want to participate?

You may discontinue participation at any time. Contact Dorothy Loth at 330-972-5714 if you would like to stop.

What kind of questions will you ask?

We ask many different kinds of questions including questions about your Chiari diagnosis, additional diagnoses, symptoms, surgical history, and your quality of life. There are also brief surveys about memory, pain, depression, and coping with illness.

Who are the investigators conducting this research?

Francis Loth, PhD is the Principle Investigator of this project. Dr. Loth is a Professor of Mechanical and Biomedical Engineering at the University of Akron. You can see his profile here: https://chiari-research.org/faculty/leadership/frank-loth/

Philip A. Allen, PhD is a co-Investigator of this project. Dr. Allen is a Professor of Psychology at The University of Akron. You can see his profile here: http://www.uakron.edu/psychology/faculty-staff/bio-detail.dot?u=paallen

Aintzane Urbizu, PhD is a co-Investigator of this project. She is a visiting Post-doctoral Research Fellow at the Conquer Chiari Research Center, at the University of Akron (in sponsorship with the Ramon Areces Foundation, Spain). Dr. Urbizu’s research focuses on the genetic basis of Chiari malformation. At the Conquer Chiari Research Center she expects to further this research and improve the knowledge (i.e. diagnostic criteria, genetic susceptibility factors) of this disease.

Dorothy Loth, MA is the Project Manager of the Chiari 1000.

Please see the following site for all researchers that contribute to the Conquer Chiari Research Center: https://chiari-research.org/faculty/

Who will see my questionnaire and information about me?

Only the research staff. They look at the questionnaire to see if it is complete and to make sure that your name and address are correct for mailing. Once your data is in our research database your identifying information is removed from your data. That is, any researcher using the data bank for medical research cannot identify you.

Why should I participate?

People volunteer to participate in research for a variety of reasons. One reason people participate is that they want to contribute to medical research that may help others with their disease. By learning about your experience, we hope to give researchers the tools to improve treatment for people with Chiari and improve their quality of life.

Will my name and medical information be available to anyone else?

No. We do not give away names or sell them, or make them available to anyone else.

What are the standardized scales you are using?

The Chiari 1000 uses 11 standardized scales. They are:

Rey Auditory Verbal Learning Test (RAVLT)
Schmidt, M. (1996). Rey auditory and verbal learning test. A handbook. Los Angeles: Western Psychological Services.

The Rumination-Reflection Questionnaire
Trapnell, P.D.,& Campbell, J.D. (1999). Private self--‐consciousness and the five--‐factor model Of personality: Distinguishing rumination from reflection. Journal of Personality and Social Psychology,76,284–304.

Short Form McGill Pain Questionnaire-2 (SF-MPQ-2)
Robert H. Dworkin, R.H., Turk, D.C., Revicki, D.A., Harding, G., Coyne, K.S., Peirce-Sandner, S., Bhagwat, D., Everton, D., Burke, L.B., Cowan, P., Farrar, J.T., Hertz, S., Max, M.B., Rappaport, B.A., & Melzack, R. (2009). Development and initial validation of an expanded and revised version of the Short-form McGill Pain Questionnaire (SF-MPQ-2). Pain, 144, 35-44.

Brief COPE Inventory
Carver, C.S., Scheier, M.F., Weintraub, J.K. (1989). Assessing coping strategies: A theoretically based approach. Journal of Personality and Social Psychology, 56, 267-283.

Depression Anxiety and Stress Scale (DASS21)
Henry JD, Crawford JR (2005) The short-form version of the Depression Anxiety Stress Scales (DASS21): Construct validity and normative data in a large non-clinical sample. Brit J Clin Psychol: 44, 227–239.

Center for Epidemiologic Studies Depression Scale (CES-D)
Radloff, L.S. (1977). The CES-D Scale : A Self-Report Depression Scale for Research in the General Population. Applied Psychological Measurement, 1, 385-401.

Illness Attitude Scale (IAS)
Stewart, S.H., & Watt, M.C. (2000). Illness attitude scale dimensions and their associations with anxiety-related constructs in a non-clinical setting. Behaviour Research and Therapy, 38, 83-99.

Impact of Event Scale-Revised (IES-R)
Christianson, S., & Marren, J. (2000). Impact of Event Scales-Revised. Try This: Best Practices in Nursing Care to Older Adults, 19.

Neck Pain Disability Index Questionnaire
Fairbanks CT, Couper C, Davies JB, O’Brien JP (1980) The Oswestry low back pain disability questionnaire, Physiol Ther: 66, 271–273.

UCLA Loneliness Scale Version 3
Russell, D. (1996). UCLA Loneliness Scale (Version 3): Reliability, validity, and factor structure. Journal of Personality Assessment, 66, 20-40.

Beighton Score for Hypermobility
Beighton, P.H., & Horan, F. (1969). Orthopedic aspects of Ehlers-Danlos Syndrome. Journal of Bone and Joint Surgery, 51, 444-453.