Clinical trials: CLN3
Eye Diseases Hereditary, Retinal Disease
Inherited Retinal Degenerative Disease Registry
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.
- Conditions
- Eye Diseases Hereditary, Retinal Disease, Achromatopsia, Bardet-Biedl Syndrome
- Trial name
- MRTR (NCT02435940)
- Where
- United States
- Volunteers
- 20,000 people, healthy volunteers welcome
- Sponsor
- Foundation Fighting Blindness
Late Infantile Neuronal Ceroid Lipofuscinosis, Batten Disease
Collection of Cerebrospinal Fluid in Healthy Children
The purpose of this study is to obtain cerebrospinal fluid from healthy children already undergoing a lumbar puncture procedure at New York Presbyterian Hospital, to act as healthy controls when compared to children with late…
- Trial name
- NCT01698229
- Testing
- Group 1
- Where
- United States
- Volunteers
- 32 people, healthy volunteers welcome
- Sponsor
- Weill Medical College of Cornell University
Inherited Metabolic Disorders, Undiagnosed Diseases
Caregiving Networks Across Disease Context and the Life Course
Background: In the U.S., about 53 million informal, unpaid caregivers provide care to a person who is ill, is disabled, or has age-related loss of function. These caregivers may be adult children, spouses, parents, or others.
- Conditions
- Inherited Metabolic Disorders, Undiagnosed Diseases, Batten's Disease, Tay Sachs
- Trial name
- NCT05007990
- Where
- United States
- Volunteers
- 2,800 people, healthy volunteers welcome
- Sponsor
- National Human Genome Research Institute (NHGRI)
Cancer, Cardiac Anomaly
Using NPT to Evaluate Providing PPC as ELNEC-PPC WBT for Nurses
The purpose of this study is to explain the provision of palliative care at the end of life by the implementation of the ELNEC course, as WBT Program using the Normalization Process Theory, that focus attention on how complex…
- Conditions
- Cancer, Cardiac Anomaly, Cystic Fibrosis, Muscular Dystrophy
- Trial name
- ELNEC-PPC (NCT04461561)
- Testing
- end-of-life nursing education consortium-pediatric palliative care as web based-training plus usual care
- Where
- Iraq
- Volunteers
- 172 people, healthy volunteers welcome
- Sponsor
- Altoosi University College