Frequently Asked Questions

1.When will enrollment for the choroideremia clinical trial begin?

We are on a timeline to initiate enrollment in the fall of 2014. This is
barring any unanticipated regulatory delays.

2. How will you decide which patients to enroll in the choroideremia clinical trial?

The subjects will need to have had genetic testing which identiﬁes a
disease-causing DNA change in the choroideremia gene. Otherwise, there
will be no chance of beneﬁt. Genetic testing can be carried out on a
blood sample. In addition, subjects will need to meet the inclusion
characteristics of the study (pending evaluation by local and federal
regulatory authorities).

3. How can I help push forward a clinical trial for my condition?

Network with patient advocate groups relevant to your condition, such as
Foundation Fighting Blindness, Choroideremia Research Foundation,
Foundation for Retinal Research; Assist in fundraising efforts to support
the research and clinical trials.

4. What can a person do if they are diagnosed with a retinal degenerative disease?

Undergo evaluations with a retinal degeneration specialist. Obtain
appropriate genetic testing to identify the cause of the condition. Obtain
up-to-date information and support from patient advocate organizations
(see above). Volunteer for clinical research studies if appropriate for your
condition and if you agree to assume the potential risks.

5. Is there any cost for participating in a clinical trial?

There are no charges for participating in our clinical trials. Travel,
lodging and food costs are covered, including those of an accompanying
person. There are no charges for the clinical testing or intervention.

6. Are your clinical trial subjects only from Pennsylvania?

No. While it can be easier on the subject/family to live in the vicinity
since there may be signiﬁcant travel obligations, we do not have
limitations based on citizenship or homeland.

7. Who can I contact to ﬁnd out more about your clinical studies?

If you are interested in participating in non-invasive imaging studies,
please contact Dr. Jessica Morgan ([email protected]) or Manzar Ashtari ([email protected]). If you are interested in participating in our clinical trials, please contact the coordinator listed on the relevant www.clinicaltrials.gov website.

8. How can I send clinical information to your team members?

Please send information by fax (215-573-7155) or mail: Dr. Jean Bennett,
University of Pennsylvania, 310 Stellar-Chance Labs; 422 Curie Blvd,
Philadelphia, PA 19104.

9. How does one get to CAROT?

*** Parking is challenging! Public parking can be found at *****

Penn Tower; 300 South 33^rd St, Philadelphia, PA 19104

119 S. 38^th Street, Philadelphia, PA 19104 (Walnut and 38^th St)

3335 Chestnut St, Philadelphia, PA 19104 (Chestnut and 34^th St)

Penn Park; 3100 Lower Walnut St, Philadelphia, PA 19104

Patient Parking (including valet parking) is available at PCAM; 3400 Civic Center Blvd; Philadelphia, PA 19104}

Directions to Stellar-Chance Labs; 422 Curie Blvd; Philadelphia, PA 19104-6069

From I-76 (Driving)

Take exit 346B toward University Ave

Merge onto S 34^th St and continue onto S. University Ave (0.2 mile).

Turn right onto Curie Blvd.

422 Curie Blvd will be on the left.

From Amtrak 30^th Street Station, Philadelphia, PA (Walking; 1.3 miles)

Walk away from Center City on Market St

Turn left on 33^rd St (0.4 mi)

Continue onto Civic Center Blvd (0.2 mi)

Turn right onto Osler Circle (0.1 mi)

Turn left onto Curie Blvd

422 Curie Blvd will be on the right.

From Septa University City Rail Station (Walking; 0.4 miles)

Head west on Spruce St

Turn left onto S 34^th St (0.1 mi)

Slight left onto Civic Center Blvd (0.2 mi)