Health Life

New tool integrates psychological, social and medical data of patients with rare diseases

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Researchers from the Universitat Oberta de Catalunya (UOC) and the technology center Eurecat have developed an innovative formal representation of rare disease data, including information unavailable in current models on rare disease patients’ biological, psychological and social profile. For their research, the researchers have obtained data on 25 patients from organizations such as Eurordis, the Spanish Rare Diseases Federation (FEDER) and the Rare Diseases Patients’ Association of Iran with the goal of including testimonials from different territories with different health systems.

The term used to refer to formal representations of knowledge that establish the different concepts of a specific field and the relationships between them is . In such representations, it is important to use an open-source data format and international standards in order to ensure that this representation is accessible in all spheres. The ontology performed by the UOC uses an open source code and is based on standards defined by the World Health Organization (WHO).

A tool for understanding patients that goes beyond treatments

The research is described in the article “Biomedical Holistic Ontology for Patients With Rare Diseases”, published in the International Journal of Environmental Research and Public Health. Lead researcher Laia Subirats explained that its value lies in “the fact that a single ontology integrates not just but also information about other aspects that affect patients’ lives, such as environmental, geographical and psychological factors, their social relations and their interests. It also includes information taken from Twitter, which gives us social data.

The end result is an improved understanding of the patient and access to new data about the patient’s interaction with the . Viewed in this light, we can say that it is a holistic ontology”. Subirats is a course instructor at the UOC’s Faculty of

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NIMH » My Mental Health: Do I Need Help?

First, determine how much your symptoms interfere with your daily life.

Do I have mild symptoms that have lasted for less than 2 weeks?

  • Feeling a little down
  • Feeling down, but still able to do job, schoolwork, or housework
  • Some trouble sleeping
  • Feeling down, but still able to take care of yourself or take care of others

If so, here are some self-care activities that can help:

  • Exercising (e.g., aerobics, yoga)
  • Engaging in social contact (virtual or in person)
  • Getting adequate sleep on a regular schedule
  • Eating healthy
  • Talking to a trusted friend or family member
  • Practicing meditation, relaxation, and mindfulness

If the symptoms above do not improve or seem to be worsening despite self-care efforts, talk to your health care provider.

Do I have severe symptoms that have lasted 2 weeks or more?

  • Difficulty sleeping
  • Appetite changes that result in unwanted weight changes
  • Struggling to get out of bed in the morning because of mood
  • Difficulty concentrating
  • Loss of interest in things you usually find enjoyable
  • Unable to perform usual daily functions and responsibilities
  • Thoughts of death or self-harm

Seek professional help:

  • Psychotherapy (talk therapy)—virtual or in person; individual, group, or family
  • Medications
  • Brain stimulation therapies

For help finding treatment, visit the NIMH Help for Mental Illnesses webpage.

If you are in crisis, call the National Suicide Prevention Lifeline at 1-800-273-TALK (8255), or text the Crisis Text Line (text HELLO to 741741).

National Institutes of Health
NIH Publication No. 20-MH-8134

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