A Study to Develop A Family Registry to Collect Alzheimer's Biomarkers

Overview

About this study

The overall purpose of this research is to understand how ADAD develops in order to eventually provide treatments for this disorder. Each biological child of a person with an ADAD mutation has a 50% risk of inheriting the mutation, and thus of developing ADAD. This study will develop a registry of families with a known ADAD mutation and will collect, analyze and bank data, tissue, and brain images from the members who participate in the DIAN research study. The data and tissue collected are available to all qualified researchers who wish to determine what changes occur before and after ADAD symptoms start. This understanding may lead to better tests and treatments for ADAD.

 

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  • Written informed consent obtained from the participant and collateral source prior to any study-related procedures.
  • Participant is aged > 18 inclusive and the child of an affected individual (clinically or by testing) in a pedigree with a known mutation for ADAD.
  • Participant is cognitively normal.  Year 12 through Year 16 priority will be given to asymptomatic adult children who are more than 15 years younger than the estimated age of symptom onset.  Enrollment of new participants with very mild, mild, or moderate cognitive impairment is allowed only with prior approval of the DIAN Coordinating Center. 
  • Participant has identified two persons who are not their full-blooded siblings who can serve as collateral sources for the study.
  • Participant is fluent in a language approved by the DIAN Coordinating Center at about the 6th grade level (international equivalent) or above.
  • Patients with Dutch mutation are eligible to enroll in DIAN, because, although data and tissue collected from these participants will not directly contribute to DIAN analyses, this data/tissue will be useful in other analyses. Beginning January 1, 2019, DIAN will cover the cost of only core operations required to complete the visits (i.e., maintaining databases, DIAN supplies, shipping costs, etc.). Sites are responsible for self-funding all other aspects of Dutch mutation visits  (i.e., travel, scans, etc.).
  • In order to manage potential safety issues (radiation), participant burden (multiple LPs) and scientific integrity (overlapping psychometrics) issues, DIAN Administration and Clinical Cores must be notified in advance of DIAN participants’ enrollment in other research studies.

Exclusion Criteria:

  • Participant has a medical or psychiatric illness that would interfere in completing initial and follow-up assessments.
  • Participant has advanced cognitive impairment requiring nursing home-level care. Enrollment of an individual with cognitive impairment must be pre-approved by the DIAN Coordinating.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Jacksonville, Fla.

Mayo Clinic principal investigator

Neill Graff Radford, M.D.

Open for enrollment

Contact information:

Sochenda Stephens CCRP

Stephens.Sochenda@mayo.edu

More information

Publications

Publications are currently not available

Study Results Summary

Not yet available

Supplemental Study Information

Not yet available