ClinicalTrials.gov record NCT02435940

Inherited Retinal Degenerative Disease Registry

Record copied from ClinicalTrials.gov: Oct 10, 2026AI summaries generated: Aug 22, 2026

Foundation Fighting Blindness My Retina Tracker Registry

StatusRecruitingThe study is currently enrolling participants. Only the study team can say whether a particular person can join.
Study typeObservationalA study in which researchers do not assign participants to a treatment or other intervention. They observe or measure what happens, which may include study visits, tests, questionnaires or a review of medical records.
Healthy volunteersAcceptedPeople who do not have the condition being studied who are allowed to take part. Some studies include both people with the condition and healthy volunteers; others may enrol only healthy volunteers.
SexAll
LocationUnited States
AI summaryWhat this study is about, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

The My Retina Tracker Registry is a patient‑initiated online registry for people affected by inherited retinal degenerative diseases (participants of any age can be registered by a parent or guardian). Participants create a profile with their eye and family history, genetic test results, and may upload medical records; they can ask clinicians to add clinical exam measurements. Data are collected prospectively, stored longitudinally, and de‑identified data can be shared with qualified researchers; data collection may continue for up to 20 years.

What it is studying. Gathers patient-reported and clinical data to learn about the range of inherited retinal diseases, the genes and variants involved, genotype–phenotype relationships, and the natural history of these conditions; it also provides de‑identified data to help researchers find potential study participants.

What the researchers hope to learn. To better understand the diversity and prevalence of inherited retinal degenerative diseases and their gene variants; to establish genotype–phenotype relationships; to describe natural history; and to provide de‑identified data and recruitment tools for researchers and clinical studies.

What this study is about

The study's own summary, as published on ClinicalTrials.gov. Underlined terms have a short explanation.

The My Retina Tracker® Registry is sponsored by the Foundation Fighting Blindness and is for people affected by one of the rare inherited retinal degenerative diseases studied by the Foundation. It is a patient-initiated registry accessible via a secure on-line portal at www.MyRetinaTracker.org. Affected individuals who register are guided to create a profile that captures their perspective on their retinal disease and its progress; family history; genetic testing results; preventive measures; general health and interest in participation in research studies. The participants may also choose to ask their clinician to add clinical measurements and results at each clinical visit. Participants are urged to update the information regularly to create longitudinal records of their disease, from their own perspective, and their clinical progress. The overall goals of the Registry are: to better understand the diversity within the inherited retinal degenerative diseases; to understand the prevalence of the different diseases and gene variants; to assist in the establishment of genotype-phenotype relationships; to help understand the natural history of the diseases; to help accelerate research and development of clinical trials for treatments; and to provide a tool to investigators that can assist with recruitment for research studies and clinical trials.

Eligibility

The criteria exactly as listed on ClinicalTrials.gov. Only the study team can say whether they apply to you.

Inclusion criteria

  • Diagnosed with an inherited retinal degenerative disease OR

Exclusion criteria

  • Glaucoma only
  • Diabetic retinopathy only
  • Non-retinal disease
  • Not heritable retinal disease

Study description and what participation involves

The study's detailed description, as published on ClinicalTrials.gov.

Show the detailed description from the registry

My Retina Tracker Registry provides two portals for data entry and review. Initial registration in the My Retina Tracker Registry is initiated by a participant, not a clinician. Using the participant portal, the participant establishes a username and password, is guided through on-line informed consent, and can then use an interactive guide to record their ophthalmic and family history, genotype and other subjective diagnosis-related and general health information. Drop-down menus and standardized vocabulary are used for database consistency. They may also attach documents, such as medical records, to maintain their personal medical files on their disease. Participants are encouraged to update their profiles regularly to create a longitudinal history of their disease. Participants can see aggregated data for all other participants in the registry and compare their own disease and status to others. After a profile has been established, Registry members may ask their clinician or genetic counselor to add specific ophthalmic exam and measurement results to the profile. This is done through the clinical portal which also uses a series of drop-down menus to expedite entry and standardize data. Clinicians cannot see the participant data when adding the clinical exam data. Participants are encouraged to collect this data at each medical exam, to create a longitudinal clinical data set. Access to de-identified data or study recruitment assistance is available to qualified investigators who may inquire by contacting Coordinator@MyRetinaTracker.org. A process that maintains patient anonymity and privacy protection, exists for researchers with Institutional Review Board-approved projects who wish to contact registry participants of interest.

AI summaryWhat participation may involve, in plain languageShow ▾Hide ▴

AI-written from the registry record, not the study's own wording. May contain errors or omissions. Check the registry text on this page and the original record ↗ before acting on it.

Create a secure online account, complete on-line informed consent, and enter a profile about their eye history, family history, genetic test results, general health, preventive measures, and interest in research. Participants can upload medical documents, update their information over time (the registry collects data prospectively, up to 20 years), and may ask their clinician or genetic counselor to add clinical exam measurements via a separate clinical portal. Participants can view aggregated, de-identified data from others and may be contacted by qualified investigators through a privacy-protecting process for IRB-approved research. No invasive study procedures are listed — participation is mainly online data entry and optional clinician-submitted clinical measurements.

How the study is structured. An observational, prospective registry accessed through a secure online participant portal. Participants complete electronic consent, enter personal, family, and genetic information, and may upload records. Participants can invite clinicians or genetic counselors to enter standardized clinical exam data through a separate clinical portal. De‑identified data or recruitment assistance can be provided to qualified investigators. Target follow-up is up to 20 years.

Questions you could ask

These questions are suggestions for a conversation with the study team or your own clinician, not advice.

  • This is an observational study, so the study itself gives no treatment. What would taking part involve for me, and would it change my usual care?
  • The listed sites are in United States. Is any of them reachable for me, and does the study help with travel?
  • Which of the eligibility criteria would need to be checked with tests before I could join?

More on Bardet-Biedl syndrome

Clinical trials7 trials listed for Bardet-Biedl syndromeEvery trial the registry lists for Bardet-Biedl syndrome, with recruitment status, phase and sites, updated from ClinicalTrials.gov.See all trials →Research updatesWhat changed in Bardet-Biedl syndrome researchLatest monthly update: September 2026. Includes: Hunger and weight changes. New research summarized each month in plain language, with links to every source paper.Read the latest update →

Important dates

Study start
June 2014
Primary completion
June 2037 (estimated)
Study completion
June 2037 (estimated)
Target enrollment
20000 participants (estimated)
Last updated on registry
May 19, 2026
Data verified
Oct 10, 2026

Sponsor and research team

The lead sponsor funds and oversees the trial. A pharmaceutical or biotech company sponsor typically means the study is testing that company's drug or device; a hospital, university, or government agency usually indicates investigator-initiated or publicly funded research.

Lead sponsor
Foundation Fighting Blindness

Central study contact

If you're interested in participating, the central contact can answer general questions about the study — including eligibility requirements and how to find a recruiting site near you. Actual eligibility is determined by the site's medical team.

Participating sites (1)

Terms used on this page · explanations by MedicalUpdates.ai

Registry
An organised collection of information about people with a particular condition, gathered over time for research. Joining a registry usually means sharing medical information, not receiving a treatment.
natural history
A study that follows how a condition changes over time without assigning an experimental treatment. It may involve study visits and tests, and is often used to plan future trials.
Inclusion Criteria
The conditions a person must meet to be considered for the study, for example a confirmed diagnosis, an age range or a test result.
Exclusion Criteria
The conditions that rule a person out even if they meet the inclusion criteria, for example other illnesses, certain medicines or pregnancy.
informed consent
The process of explaining a study, including its risks and what participation involves, so that a person can decide freely whether to take part. Consent is usually documented in writing, and a participant can choose to leave the study later.

The study record on this page is reproduced from ClinicalTrials.gov, a database of the U.S. National Library of Medicine, where it was submitted by the study sponsor. MedicalUpdates.ai does not own this content, is not affiliated with or endorsed by ClinicalTrials.gov, NIH, or the U.S. Government, and does not verify the record. Plain-language notes, the glossary and the questions above are added by this site; text in the boxes marked "AI summary" was written by an AI model and may contain errors. Registry records change over time. Check the original record for the current version and discuss eligibility or participation with a qualified healthcare professional.

← Back to clinical trials