By Eric A. Storch, Renee Fredrick, Carol Cappi, Paola Giusti, Karen Martinez, Olivia Morris, Pablo Moya, Humberto Nicolini, Marcos Ochoa, Michelle Pato, the LATINO Study Team, and James J. Crowley
This article was initially published in the Winter 2022 edition of the OCD Newsletter.
The LATINO Study Team covers multiple countries, and includes the following people: https://tinyurl.com/LATINOproject
Obsessive compulsive disorder (OCD) is a common condition affecting approximately 1-2% of the world population. Characterized by distressing intrusive thoughts, images or impulses and unwanted repetitive behaviors, OCD can have wide-reaching implications for both individuals with OCD and their families. While the impacts of this condition are well-studied, what causes OCD remains less clear.
While current evidence suggests that genetics play a role in the development of OCD, the exact genes and biological mechanisms contributing to OCD remain elusive. Studying this is crucial because identifying factors contributing to OCD might lead to the development of more effective and personalized treatments. While genomic studies of OCD have made exciting discoveries and are beginning to reveal information about risk, more than 95% of the people involved in these studies are of European ancestry. Unfortunately, this poses a significant problem, as OCD is not limited solely to this population. If not addressed, this Eurocentric bias would likely result in OCD genetic findings being more accurate for individuals of European ancestry than other ancestries, like those who are Latin American, Asian, or Black. This would further contribute to already existing health disparities, making potential future applications of genomics and precision medicine less reliable for people of non-European ancestry.
Recently, an interdisciplinary team led by Drs. James Crowley (University of North Carolina at Chapel Hill) and Eric Storch (Baylor College of Medicine) was funded by the National Institute of Mental Health (NIMH) to carry out an ambitious project to address this lack of diversity. This group spent much of the past two years assembling a network of over 50 sites in Latin America, the US, and Canada that treat a large number of ancestrally diverse OCD patients (see Figure 1).
We have come together with experts in OCD genetics and the genetics of diverse admixed populations for this NIMH-funded study called the Latin American Trans-ancestry Initiative for OCD Genomics project (LATINO, latinostudy.org). The primary goal of LATINO is to collect clinical information and DNA through saliva from at least 5,000 Latinx adults and children with OCD. We will compare these results to those of people without OCD which are collected by other Latinx psychiatric genetics projects. All results (from over 10,000 Latinx individuals) will be used to perform a novel trans-ancestry genetic analysis in collaboration with other groups working on the genetics of OCD. We will also use these data to inform ways of determining risk of having OCD using polygenic risk score analysis, which estimates the genetic probability of a person having a condition. Overall, this study will highlight the importance of including all major ancestral groups in all kinds of genomic studies, representing all people who may be affected with OCD, understanding the causes of OCD across individuals of all races and ethnicities, and reducing disparities in future applications of genomics in precision medicine.
Studying complex genetic traits such as those in OCD requires a large and diverse sample of participants. As noted, we have put together a multidisciplinary team across North, South, and Central America to fulfill our goal. As shown in the map, our team includes over 50 specialty OCD clinics and expert clinical settings in Latin America, including teams from Argentina, Bolivia, Brazil, Chile, Colombia, Ecuador, El Salvador, Guatemala, Honduras, Mexico, Paraguay, and Peru, as well as multiple cities/regions in the US (e.g., Rio Grande Valley, TX, San Diego, CA, Tampa, FL, New York City, and San Juan, Puerto Rico) and Canada.
While studying genetics is very exciting, LATINO is also much more than a genetic study. OCD is under-recognized, under-diagnosed, under-treated and under-studied in Latinx individuals. Many individuals go too long (if ever!) before receiving help. Therefore, in addition to decreasing the Eurocentric bias in OCD genetic samples, LATINO is working with other stakeholders and patient-centered organizations to increase awareness of OCD in Latinx individuals and improve their access to evidence-based treatments such as cognitive behavioral therapy. First, LATINO plays a central role in executing social media-based awareness campaigns with groups such as ALTOC and TalkTOC, and providing hands-on training for psychologists, therapists, and psychiatrists interested in treating OCD. Second, in partnership with ALTOC, we held the first Latin American Congress for OCD in Cartagena, Colombia in 2022, and will host our next meeting in Lima, Peru (June 16-17, 2023). Third, LATINO facilitates OCD research in Latin America by translating key instruments into Spanish and Portuguese, validating them through Latinx individuals, and providing a genomics training program. Fourth, clinical training opportunities are being held, including consultation groups on psychotherapy and training in treatment, genetics, and assessment. Finally, LATINO is aiding Latin American OCD researchers with identifying funding opportunities and establishing mutually beneficial collaborations and mentoring opportunities, with the goal of decreasing disparities across multiple levels.
Given that LATINO aims to collect saliva samples and analyze DNA from at least 5,000 Latinxs with OCD, accomplishing our recruitment goals will take a broad, multipronged effort, including a grassroots effort by people directly affected by this condition. Thus, it is important to spread the word and encourage Latinx individuals with OCD (or who had OCD in the past) to become involved. One way of doing so is to actually participate! The project involves a video conference interview (about 2.5 hours) where you would be asked about OCD and related concerns and afterwards provide a saliva sample that is mailed to you. Another is just to spread the word in your community (see box insert).
To participate, you must:
- be between the ages of 7-89
- have current or past symptoms of OCD (no formal diagnosis is needed)
- have Latin American or Hispanic ancestry (yourself, a parent, or grandparent must have been born in Latin America or the Caribbean, or your family descends from Latin America).
If you believe you are eligible and want to join the study, you can take a short survey by visiting redcap.link/latino or by scanning the QR code. If you live in one of the participating countries outside the US and would like to participate, please email us at email@example.com.
Please feel free to reach out to the project team at firstname.lastname@example.org to learn more about our research and to find out how you could become involved. We have also created an interactive website with additional information in English, Spanish, and Portuguese, available at latinostudy.org.