Frequently Asked Questions

General questions

Alzheimer’s disease has a significant impact not only on patients with this brain disorder of aging but also on people caring for those patients. ACAD is designed for us to spare future generations from the effects of AD. No cure is currently available. Part of the difficulty in identifying a cure is that we do not yet have enough information to understand how the disease affects different populations around the globe. In early stages, the main symptom may be mild memory loss. Gradually, AD patients may have difficulty recognizing family and friends or communicating with others, which is burdensome for both patients and caregivers.

The majority of AD studies focus on Caucasians. In recent years, African Americans and Hispanics started to draw the attention of the research community. However, Asian Americans are still underrepresented in AD studies, in particular genetic studies. ACAD will assemble the first large cohort for studying AD genetics in Asian Americans and Canadians.
The ultimate goal of ACAD is to develop more reliable AD diagnostics, more accurate risk predictions, and more effective treatments and health delivery for the Asian American and Canadian populations.

Genome-wide association studies (GWAS) have led to many Alzheimer’s Disease (AD) genetic findings, new insights of the disease, and novel drug targets. However, most of these findings are made on participants with European ancestry, and knowledge about AD genetics among Asian Americans is especially limited due to lack of participants. Comprising 6% of the US populace, Asian Americans are under-sampled and deserve more scientific investment.

A genome is the complete DNA of an organism. Each person has a similar but slightly different DNA and these differences can explain some traits such as eye color. Researchers developed an approach, called genome-wide association study (GWAS), to find associations between genetics and certain traits such as eye color and height. Genetics can be associated with diseases as well. In fact, research shows that Alzheimer’s disease is associated with certain genetic variations. Several genes are found associated with AD: the most well-studied one is called APOE. GWAS can help us identify genetic variations that are associated with AD.

The most important factor for finding disease genes is having a large volume of high quality data. Since some genetic variations are rare, researchers need a large volume of data to properly identify any association between a certain gene and AD. Also, genes vary across races. The research results based on Caucasian participants may not entirely apply to other races. We need Asian participants to identify genes that are associated with AD and are specific to Asians.

To participate in ACAD, we will ask you to provide a saliva sample. A blood sample will be optional. These biosamples provide DNA, and we will test them for genetic markers that may be related to AD.

Along with the biosample, participants will be asked to fill out a lifestyle and demographics questionnaire, a questionnaire about your medical history, and a cognitive exam. . The questionnaires will help researchers better understand how the environment plays a role in AD.

Plasma is the liquid component of blood. In research and treatment, plasma is important because it can serve as a biomarker, which is an indicator of whether disease is present. It is optional to provide a plasma sample for ACAD. If you choose to provide plasma, ACAD will study it to try and determine whether blood tests can be used to diagnose or detect Alzheimer’s disease.

There is no direct benefit to the individual as treatments are still years away. We also do not return our findings to participants as our genotyping approach is for assembling large sample sizes research purposes, not precise enough for clinical purposes.

The benefits for the society are enormous. We will better understand genetics of AD in Asian Americans, and be able to develop better diagnostics and disease risk models for this population. When combined with data from other populations it will also increase power of gene discovery.

ACAD is committed to engaging and educating the community. You will learn more about the disease from participating in the study.

A possible risk from your participation in this study involves loss of privacy about your DNA. Since you share some genetic information with your family, relatives’ genetic information could be used to identify you or vice versa.

Like all human studies, there is a slight risk that there could be a breach of the security of the computer systems storing your data resulting in the access of information about family or medical history. Multiple safeguards are in place to minimize this risk.

ACAD is supported by the National Institute on Aging (R56-AG069130) and the Department of Pathology and Laboratory Medicine at the University of Pennsylvania Perelman School of Medicine. The ACAD team can be found here.

Privacy-related questions

GWAS needs to study the entire genome as our experience shows genes associated with disease may occur in genomic regions that had never been studied before. GWAS needs a large sample so our findings can reach genome-wide significance. These variants are typically highly reproducible, the gold standard in science.

These data can be analyzed in many ways; as more samples or new types of outcome data are assembled, scientists often reanalyze your data which leads to novel discoveries. It is important that genetic data are available to scientists who can explore them in depth.

Your data will be protected and only used for research by qualified investigators who are committed to protecting your data and your privacy. Investigators need to submit an application, which will be reviewed by the National Institute on Aging Genetics of Alzheimer‘s Disease Data Storage Site (NIAGADS). Investigators are not allowed to use your data beyond the purpose stated in their applications.
You can withdraw from our study at any time.

All data will be de-identified and stored at a secure server behind a firewall managed by the ACAD data coordinating center. De-identified data will also be shared with the research community through the review process via NIAGADS mentioned above. Investigators need to agree to protect your data and only use it for the approved research project before receiving data from ACAD.

No, all data will be fully de-identified. Namely, there is no information that can link your data to your identity. Furthermore, researchers and their institutions who are requesting your data will have to agree first that they will not try to identify you from your data. There are data use agreements in place to protect your privacy.

The risk of participating in ACAD is categorized as minimal risk. Minimal risk is defined as probability and magnitude of harm or discomfort anticipated in the research are not greater in and of themselves than those ordinarily encountered in daily life or during the performance of routine physical or psychological examinations or tests.

Procedure-related questions

Please use the contact form to send us a message and we will respond shortly.

A recruiting site will contact you and ask a few questions to see if you are qualified to participate. The procedure can be found here.

No, this is for research purposes and the data we collect are not precise enough for medical purposes.

Yes, you can withdraw from ACAD at any time by contacting the recruiting site where you participated.

For questions about enrolling into the study, please contact the closest recruiting site.

For all other questions, please use the ACAD email form.

When the study is complete, which means the investigation has reached the last enrolled participant, the stipulated objectives and timelines, the data has been monitored, cleaned and locked for publication, the site PIs will continue to maintain confidentiality protections of the data. The participant identifiers connected with the research data and the source documentation will be maintained in a secure manner and will not be destroyed until at least 3 years after the study completion or publication in accordance with NIH Record Retention and Access Policy. This is allowable under the ICF and HIPAA for this study.