Inherited Retinal Degenerative Disease Registry
| Status: | Recruiting |
|---|---|
| Conditions: | Neurology, Ocular, Ocular, Ocular, Ocular, Ocular, Ocular, Ocular, Metabolic |
| Therapuetic Areas: | Neurology, Ophthalmology, Pharmacology / Toxicology |
| Healthy: | No |
| Age Range: | Any |
| Updated: | 12/15/2018 |
| Start Date: | June 2014 |
| End Date: | June 2037 |
| Contact: | Registry Coordinator |
| Email: | Coordinator@MyRetinaTracker.org |
| Phone: | 800-683-5555 |
Foundation Fighting Blindness Registry, My Retina Tracker
My Retina Tracker® is a registry for people affected by an inherited retinal degenerative
disease. It is a patient-initiated registry accessible via a secure on-line portal at
www.MyRetinaTracker.org. Affected individuals and genetically related, unaffected, family
members who create entries are guided to create a profile that captures the participants'
perspective on their disease and its progress; family history; genetic testing results;
preventive measures; 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 are: to better understand the heterogeneity of the inherited retinal
degenerative diseases; to understand the prevalence of the different diseases and gene
mutations; 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 mechanism that facilitates more rapid
recruitment for research studies and clinical trials.
disease. It is a patient-initiated registry accessible via a secure on-line portal at
www.MyRetinaTracker.org. Affected individuals and genetically related, unaffected, family
members who create entries are guided to create a profile that captures the participants'
perspective on their disease and its progress; family history; genetic testing results;
preventive measures; 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 are: to better understand the heterogeneity of the inherited retinal
degenerative diseases; to understand the prevalence of the different diseases and gene
mutations; 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 mechanism that facilitates more rapid
recruitment for research studies and clinical trials.
My Retina Tracker provides three different portals for data entry and review. An entry in My
Retina Tracker 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 information. Drop-down menus and standardized
vocabulary are used for database consistency. They may also attach documents, such as medical
records, to maintain personal 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.
Once a participant profile has been established, participants 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 is available through the Research Portal. Investigators may
apply through the site for research access username and password. This access allows
searching of both participant provided and clinical data and may also be used to pre-screen
registrants as potential participants for research studies or clinical trials. 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.
Retina Tracker 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 information. Drop-down menus and standardized
vocabulary are used for database consistency. They may also attach documents, such as medical
records, to maintain personal 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.
Once a participant profile has been established, participants 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 is available through the Research Portal. Investigators may
apply through the site for research access username and password. This access allows
searching of both participant provided and clinical data and may also be used to pre-screen
registrants as potential participants for research studies or clinical trials. 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.
Inclusion Criteria:
- Diagnosed with an inherited retinal degenerative disease OR
- Genetically-related to a person diagnosed with an inherited retinal degenerative
disease
Exclusion Criteria:
- Glaucoma
- Diabetic retinopathy
- Non-retinal disease,
- Not heritable retinal disease
We found this trial at
1
site
Columbia, Maryland 21046
Principal Investigator: Brian Mansfield, PhD
Phone: 800-683-5555
Click here to add this to my saved trials
