Patient-led research gathering information on polycystic ovary syndrome
Gathers health information from people with polycystic ovary syndrome and from people without it.
Key facts
- Who runs it
- PCOS Challenge: The National Polycystic Ovary Syndrome Association
- Where
- Bethesda, United StatesSee the site
- Trial code
- Registry title
- The PCOS Challenge Study
- Status
- Recruiting
- People taking part
- 15,000 people, planned
- Started
- 22 Jun 2022
- Expected to end
- 31 Dec 2042
- Type of study
- Observational, 2 groups
- Record updated
- 4 April 2023
Who can take part
AI summary
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The trial is looking for people with PCOS, people who think they have PCOS, and people with PCOS symptoms. Women without PCOS can also join as a comparison group.
- Age
- 12 Years to 80 Years
- Sex
- Female only
- Disease stage
- PCOS diagnosed by a health professional, self-diagnosed PCOS, or PCOS symptoms.
Main reasons for not taking part
- Cannot understand the surveys or what is being asked
- Unwilling to sign the consent form
The registry criteria, word for word
Show all 5 criteriaShow less
Who can take part
- Diagnosed with PCOS by a health professional, self-diagnosed with PCOS or individuals with PCOS symptoms
- Willing to sign the consent form
- Able to understand the registry surveys or what is being asked
Who cannot take part
- Unable to understand the surveys or what is being asked
- Unwilling to sign the consent form
Check if you might fit
Answer for yourself. This is not a decision: only the study team can say whether you can take part.
- Are you between 12 and 80 years old?
Where in United States
- PCOS Challenge: The National Polycystic Ovary Syndrome AssociationBethesda, United StatesContact: Sasha Ottey, MHA, MT (ASCP)Taking people
About the trial
What the trial wants to find out
The primary purpose of The PCOS Challenge Study will be to conduct high-quality research where patients are included in the design, and answering the questions that patients identify as important to their lived experience with PCOS. In partnership with clinical investigators, patients will work on the development and management of data collection, the research agenda, and the sharing of research findings. The PCOSC Study will promote the advancement of research that provides reliable, useful, and meaningful information to patients with PCOS and their clinicians.
Read full original descriptionShow less
The population for The PCOS Challenge Study will include individuals with a clinical diagnosis of PCOS, individuals self-diagnosed with PCOS, individuals with symptoms of PCOS (e.g., hirsutism, irregular menstrual cycles), and demographic-matched controls without PCOS.
The 2 groups in the trial
- Target Population
The target population includes individuals diagnosed with PCOS by a healthcare provider, self-diagnosed with PCOS, or who are exhibiting PCOS Symptoms and willing to sign the consent.
- Control Population
The control population includes people born biologically female who have not been diagnosed with PCOS and who also do not have symptoms of PCOS.
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorData and sources
- Registry record
- Listed on ClinicalTrials.gov.
- Official title
- The PCOS Challenge Study: For the Collection of Information to Advance Research and Improve Care for PCOS Patients
- Plain-language title
- Patient-led research gathering information on polycystic ovary syndromeGenerated from the registry record. The registry title is the official one.
- AI summary
- From the trial's eligibility criteria. Read by machine on 12 November 2026.
- Fit questions
- Built from NCT05797909, who can take part
- Record updated
- 4 April 2023