Pulmonary Arterial Hypertension (PAH)inPHormaNCT07207525
Information Sources in Pulmonary Hypertension
An observational study of Pulmonary Arterial Hypertension (PAH), run by University of Sao Paulo General Hospital at 1 site in Brazil.
Trial summary
Pulmonary hypertension is a serious disease that affects patients' health, daily life, and emotional well-being. Many patients and their caregivers actively look for information to better understand the condition and its treatment. Read more about this study
- Who is it for?
- Ages 18 years and older
- Conditions the study is for
- Pulmonary Arterial Hypertension (PAH)
- How many people
- 100 participants
- Where
- 1 siteBrazil
- Study dates
- Nov 2025to Mar 2027
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- No healthy volunteers
- Adult, Older adult
Study population: Adults with a confirmed diagnosis of pulmonary hypertension and their informal caregivers (family members or non-professional supporters), recruited from a specialized center in Brazil.
Who may be able to join
- Age ≥ 18 years
- Confirmed diagnosis of pulmonary hypertension (any clinical group) or informal caregiver of a patient with pulmonary hypertension
- Ability to read and understand the questionnaire
- Signed informed consent (ICF/TCLE)
Who cannot join
- Inability to understand or complete the questionnaire
- Refusal to participate or not signing the informed consent
Trial locations and contacts
1 site in 1 country. Contact the study team or a site near you to ask about taking part.
Brazil1 site
Instituto do Coração (InCor), Hospital das Clínicas HCFMUSP, Faculdade de Medicina, Universidade de São Paulo
São Paulo, São Paulo, 05403-900
Caio Fernandes, Principal Investigator, PhD, 1126615034, caio.cesar@hc.fm.usp.br
About this study
Official title: Sources of Information and Search Patterns on Pulmonary Hypertension in Patients With Confirmed Diagnosis and Their Caregivers (inPHorma)
Pulmonary hypertension is a serious disease that affects patients' health, daily life, and emotional well-being. Many patients and their caregivers actively look for information to better understand the condition and its treatment. However, the quality of information found in different sources, such as the internet, social media, health professionals, and patient groups, can vary.
This study will use a short questionnaire to learn where patients and caregivers search for information, what topics they look for, how satisfied they are with what they find, and which sources they trust most. The results will help improve communication strategies, educational materials, and support programs for people living with pulmonary hypertension and their families.
Read the detailed description
Pulmonary hypertension (PH) is a chronic and progressive disease often diagnosed late, which forces patients and caregivers to actively seek information to understand and manage the condition. The complexity of PH, combined with its physical, emotional, and social impact, makes access to reliable health information essential.
This cross-sectional observational study will apply a structured, self-administered questionnaire to approximately 200 participants (100 patients with confirmed PH and 100 informal caregivers). The questionnaire covers demographic and clinical characteristics, information sources used, expectations and satisfaction, most frequently searched topics, experiences with conflicting information, and preferred communication channels.
The goal is to describe patterns of health information seeking in this population and identify opportunities to improve communication, educational resources, and patient-caregiver support. Findings are expected to contribute to the development of more effective health communication strategies and to guide health professionals in addressing information needs in pulmonary hypertension.
- Conditions
- Pulmonary Arterial Hypertension (PAH)
- Keywords
- Pulmonary Hypertension, Patients, Information Needs, Information Sources, Health Information Seeking
- Medical subject headings
- Pulmonary Arterial Hypertension, Hypertension, Pulmonary
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| Patients With Pulmonary Hypertension | Adults (≥18 years) with a confirmed diagnosis of pulmonary hypertension, from any clinical group. Participants will complete a structured, self-administered questionnaire about their sources of health information, expectations, satisfaction, and preferred communication channels. No intervention or treatment is provided. | |
| Informal Caregivers of Pulmonary Hypertension Patients | Adults (≥18 years) who provide non-professional care or support to a patient with pulmonary hypertension (family member or close contact). Caregivers will complete the same structured questionnaire, focusing on their experiences, information needs, and trusted sources. No intervention or treatment is provided. |
What is being measured
The primary outcome is the main question the study is designed to answer.
Main Sources of Health Information
Identification of the primary sources of information used by patients with pulmonary hypertension and their informal caregivers, as reported in the structured questionnaire.
Measured: Up to 12 months after study start
Secondary outcomes (5)
Satisfaction With Health Information
Level of satisfaction with the health information found, measured on a 5-point Likert scale (1 = not satisfied, 5 = very satisfied).
Measured: Up to 12 months after study start
Confidence in Finding Information
Degree of confidence when searching for information, measured on a 5-point Likert scale (1 = not confident, 5 = very confident).
Measured: Up to 12 months after study start
Frequency of Conflicting Information
Proportion of participants reporting that they found contradictory or inconsistent health information related to pulmonary hypertension.
Measured: Up to 12 months after study start
Most Frequently Searched Topics
Distribution of the main topics searched (e.g., treatments, prognosis, daily care, rights/benefits) as reported in the questionnaire.
Measured: Up to 12 months after study start
Trusted Communication Channels
Identification of the channels considered most reliable for health information (e.g., physician, healthcare team, patient groups, internet sources).
Measured: Up to 12 months after study start
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted6 Oct 2025
- Study startNov 2025 (estimated)
- Primary completionDec 2026 (estimated)
- Study completionMar 2027 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Pulmonary Arterial Hypertension (PAH)Studies of the same condition, open and under way.
- More trials run by University of Sao Paulo General HospitalThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Other
- Time perspective
- Prospective
- Enrolment
- 100 participants (estimated)
Sponsor and investigators
- Lead sponsor
- University of Sao Paulo General Hospital
- Sponsor type
- University, hospital or other
- Responsible party
- Principal investigator, Caio Júlio César dos Santos Fernandes, University of Sao Paulo General Hospital
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT07207525
- Sponsor's protocol ID
- SGP 27368
- Acronym
- inPHorma
- Status last verified
- Sep 2025
- First submitted
- 26 Sep 2025
- Last updated
- 6 Oct 2025
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- Undecided
Study at a glance
From the registry record, last updated by the sponsor on 6 Oct 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Sources of Information and Search Patterns on Pulmonary Hypertension in Patients With Confirmed Diagnosis and Their Caregivers (inPHorma)
- ClinicalTrials.gov ID
- NCT07207525
- Acronym / sponsor ID
- inPHorma / SGP 27368
- Conditions
- Pulmonary Arterial Hypertension (PAH)
- Keywords
- Pulmonary Hypertension, Patients, Information Needs, Information Sources, Health Information Seeking
- Study type
- Observational
- Recruitment status
- Not yet recruiting
- Enrolment
- 100 participants (estimated)
- Lead sponsor
- University of Sao Paulo General HospitalUniversity, hospital or other
- Study start
- Nov 2025 (estimated)
- Primary completion
- Dec 2026 (estimated)
- Study completion
- Mar 2027 (estimated)
- First posted
- 6 Oct 2025 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
Pulmonary hypertension is a serious disease that affects patients' health, daily life, and emotional well-being. Many patients and their caregivers actively look for information to better understand the condition and its treatment. However, the quality of information found in different sources, such as the internet, social media, health professionals, and patient groups, can vary.
This study will use a short questionnaire to learn where patients and caregivers search for information, what topics they look for, how satisfied they are with what they find, and which sources they trust most. The results will help improve communication strategies, educational materials, and support programs for people living with pulmonary hypertension and their families.
Detailed description
Pulmonary hypertension (PH) is a chronic and progressive disease often diagnosed late, which forces patients and caregivers to actively seek information to understand and manage the condition. The complexity of PH, combined with its physical, emotional, and social impact, makes access to reliable health information essential.
This cross-sectional observational study will apply a structured, self-administered questionnaire to approximately 200 participants (100 patients with confirmed PH and 100 informal caregivers). The questionnaire covers demographic and clinical characteristics, information sources used, expectations and satisfaction, most frequently searched topics, experiences with conflicting information, and preferred communication channels.
The goal is to describe patterns of health information seeking in this population and identify opportunities to improve communication, educational resources, and patient-caregiver support. Findings are expected to contribute to the development of more effective health communication strategies and to guide health professionals in addressing information needs in pulmonary hypertension.
Study design
- Observational model
- Other
- Time perspective
- Prospective
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| Patients With Pulmonary Hypertension | – | –Adults (≥18 years) with a confirmed diagnosis of pulmonary hypertension, from any clinical group. Participants will complete a structured, self-administered questionnaire about their sources of health information, expectations, satisfaction, and preferred communication channels. No intervention or treatment is provided. |
| Informal Caregivers of Pulmonary Hypertension Patients | – | –Adults (≥18 years) who provide non-professional care or support to a patient with pulmonary hypertension (family member or close contact). Caregivers will complete the same structured questionnaire, focusing on their experiences, information needs, and trusted sources. No intervention or treatment is provided. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Adult, Older adult
- Study population
- Adults with a confirmed diagnosis of pulmonary hypertension and their informal caregivers (family members or non-professional supporters), recruited from a specialized center in Brazil.
Key inclusion criteria (4 listed)
- Age ≥ 18 years
- Confirmed diagnosis of pulmonary hypertension (any clinical group) or informal caregiver of a patient with pulmonary hypertension
- Ability to read and understand the questionnaire
- Signed informed consent (ICF/TCLE)
Key exclusion criteria (2 listed)
- Inability to understand or complete the questionnaire
- Refusal to participate or not signing the informed consent
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Main Sources of Health Information
Time frame: Up to 12 months after study start
Identification of the primary sources of information used by patients with pulmonary hypertension and their informal caregivers, as reported in the structured questionnaire.
5 secondary outcomes
Satisfaction With Health Information
Time frame: Up to 12 months after study start
Confidence in Finding Information
Time frame: Up to 12 months after study start
Frequency of Conflicting Information
Time frame: Up to 12 months after study start
Most Frequently Searched Topics
Time frame: Up to 12 months after study start
Trusted Communication Channels
Time frame: Up to 12 months after study start
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 6 Oct 2025.
- Individual participant dataSharing planned: Undecided
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Pulmonary Arterial Hypertension (PAH), run by University of Sao Paulo General Hospital at 1 site in Brazil.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 4 inclusion and 2 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: opening soon, as of the sponsor's last update on 6 Oct 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Brazil. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Caio Fernandes, Principal Investigator (+551126615034, caio.cesar@hc.fm.usp.br), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Main Sources of Health Information (time frame: Up to 12 months after study start). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 6 Oct 2025.