Contact form
Email: AWulff@mail.cho.org
Phone: 510-428-3885 ext:5966

The registry is a database of Cystic Fibrosis patients around the United States. The registry contains information about the patient including demographics, nutrition and PFT's. This registry allows us to have a centralized location for information about our CF patients. It also allows us to compare our center to those around the nation and compare how our CF patients perform relative to the national averages.

Eligible Candidates:

• Any individual diagnosed with Cystic Fibrosis

Cystic fibrosis (CF) is a disease characterized by high salt content in the sweat, digestive problems, and infected mucus build-up in the lungs. This state-wide research study looks at the sweat testing results of CF screened positive newborns, and their fluid to salt balance. This study is helping California CF Centers more fully understand the role of the fluid to salt balance in the sweat chloride value.

Eligible Candidates:

• Positive California CF newborn screening results
• Age at first sweat test between 14 days and 6 months
• Weight at first sweat test >2Kg

Compensation/Reimbursement:

• $20/visit (maximum of 5 visits ->$100 maximum)

This study is attempting to understand what other genes and other factors may be responsible for the difference or similarity of illness between siblings.

The family completes a medical history questionnaire and each CF patient will complete a personal questionnaire. Blood samples are taken from both siblings as well as the parents.

Eligible Candidates:

• Families with 2 or more siblings with CF may join.

The investigators want to find out whether certain DNA mutations affect lung and liver diseases in CF patients. To find out, investigators need to look at the DNA in the blood samples from CF patients.

This is a one-time blood draw requiring 35ml of blood.

Eligible Candidates:

• A CF patient with any combination of the following two known CFTR Genotype alleles (both CFTR alleles must be identified): DF508, G542X, G551D, R553X, W1282X, N1303K, 3905insT, 1078delT, 621+1G>T, 1717-1G>A, DI507, R560T, S549N, 3659delC, G480C, Any stop mutation (CFTR Genotype ending in "X")
  • All 15+ year old's with a consistent baseline FEV1 % predicted value in the upper 20th percentile.
    OR
  • All 8+ year old's with a consistent baseline FEV1 % predicted value in the lower 20th percentile.

Compensation/Reimbursement:

• $25 stipend

This study, the Health of Latin Americans with Cystic Fibrosis (HOLA-CF) is investigating potential genetic modifiers in Hispanics/Latinos with CF. Through resources like the CF Foundation Patient Registry, investigators have noticed a troubling trend: Hispanics/Latinos with CF tend to do slightly worse than non-Hispanics/Latinos with CF, even after accounting for any potential socioeconomic differences.

The investigators want to find out whether certain DNA mutations within the Hispanic/Latino population are responsible for this deficit. To answer this question, CF Centers across the country are being asked to enroll Hispanic/Latino patients in this study. This study requires a one-time blood draw of about 6ml from CF patients.

Eligible Candidates:

• Patients with confirmed diagnosis of Cystic Fibrosis
• Patients who consider themselves of Hispanic/Latino ethnicity
• Patients who have consented to the CF Foundation Patient Registry

Compensation/Reimbursement:

• $20 stipend

This study, titled Prevalence and Impact of Depression and Anxiety in CF aims to assess the levels of anxiety and depression in patients with CF and caregivers of patients with CF. Past research has shown an increased trend towards depression and anxiety in adults with CF, however there is not yet any data about children with CF or their caregivers. Participants complete a one-time validated questionnaire that takes between 10-15 minutes to complete.

Eligible Candidates:

• Patients who are >12 years old with confirmed diagnosis of Cystic Fibrosis
• Patients must have consented to the CF Foundation Patient Registry
• Caregivers of individuals with Cystic Fibrosis (i.e. parent/guardian)

The Summer Research Program at Children's Hospital Oakland Research Institute (CHORI) provides summer research opportunities for undergraduate students, medical students, and health profession students. Based on a structured curriculum, including participation in weekly seminars, research discussions, and a one-day Research Symposium, the CHORI Summer Research Program is designed to provide an unsurpassed opportunity for students to immerse themselves fully in the world of basic and/or clinical research for three months during the summer.

Please click here to read more about the Summer Research Program at CHORI and find out how to apply.