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Global Patient Registry of Inherited Retinal Diseases (EYERD Registry)

Last Updated   May 9, 2025

Want to learn how to participate in this trial?

CR109326

OVERVIEW

  • Sexes Eligible for Study
    all
  • Age
    3+ years
  • Phase
    phase 3
    3
  • Sites
    69 Sites
  • Status
    Recruiting

SUMMARY

The purpose of this study is to better understand the natural history of Inherited Retinal Disease (IRD) and help inform patient management.

CONDITIONS

  • Inherited Retinal Diseases

ELIGIBILITY


Inclusion Criteria:

For Participant Selection:

* Participant has any clinically documented sign(s) and/or symptom(s) consistent with an Inherited Retinal Disease (IRD), or asymptomatic with documented retinal changes detected by imaging or electrophysiology
* Participant has documented genetic variant(s) (known pathogenic, likely pathogenic, or variants of uncertain significance) in relevant genes for any of the following IRDs: X-Linked Retinitis Pigmentosa (XLRP) and/or Achromatopsia (ACHM)
* Participant or legally acceptable representative has provided informed consent (and participant assent, when applicable) in accordance with local requirements
* Participant is able to have relevant visual and/or retinal assessments performed

For Caregiver Selection:

* Caregiver has consent from the associated participant to participate in the study, or participant assent and consent from their legally acceptable representative
* Male or female aged greater than or equal to (>=)18 years
* Identified by an enrolled participant (or their legally acceptable representative*) as a primary caregiver
* Caregiver has provided informed consent in accordance with local requirements


Exclusion Criteria:

For Participant Selection:

- Participant has received a treatment in an IRD-related interventional trial, or is being screened for an IRD-related interventional trial

For Caregiver Selection:

- Caregiver has an IRD diagnosis and presents with symptoms (visual impairment)


Inclusion Criteria:

For Participant Selection:

* Participant has any clinically documented sign(s) and/or symptom(s) consistent with an Inherited Retinal Disease (IRD), or asymptomatic with documented retinal changes detected by imaging or electrophysiology
* Participant ha

More...

DETAILS

LOCATIONS

Locations in:
United States, Austria, Brazil, Canada, Denmark, France, Germany, Israel, Italy, South Korea, Spain, Switzerland, United Kingdom, China, Australia, Belgium, Finland, Japan
Country (18) City or Province (69) Status
United States Birmingham University of Alabama Birmingham
RECRUITING
United States Little Rock University of Arkansas for Medical Sciences
RECRUITING
United States Los Angeles University of Southern California
RECRUITING
United States Iowa City University of Iowa
RECRUITING
United States New Orleans Ochsner Medical Center
RECRUITING
United States Baltimore John Hopkins Hospital
RECRUITING
United States Ann Arbor Univ of Michigan Medical Center
RECRUITING
United States Minneapolis University Of Minnesota Medical Center
RECRUITING
United States Cleveland Cleveland Clinic
RECRUITING
United States Pittsburgh UPMC
RECRUITING
United States Bellaire Retina Consultants of Texas
RECRUITING
United States Houston Baylor College of Medicine
RECRUITING
United States Houston University of Texas Houston
RECRUITING
Austria Linz Kepler Universitätsklinikum GmbH
RECRUITING
Brazil Belo Horizonte INRET Clínica e Centro de Pesquisa
RECRUITING
Brazil São Paulo Instituto De Genetica Ocular
RECRUITING
Canada Toronto Sunnybrook Health Sciences Center
RECRUITING
Denmark Glostrup Rigshospitalet Glostrup
RECRUITING
France Montpellier CHU Montpellier
RECRUITING
France Nantes CHU Nantes
RECRUITING
France Paris Centre Hospitalier National d'Ophtalmologie des Quinze-Vingts
RECRUITING
Germany Bonn Universitatsklinikum Bonn
RECRUITING
Israel Ramat Gan The Chaim Sheba Medical Center
RECRUITING
Italy Firenze Azienda Ospedaliero Universitaria Careggi
RECRUITING
Italy Milano ASST Santi Paolo e Carlo
RECRUITING
Italy Roma IRCCS Fondazione G.B. Bietti per lo Studio e la Ricerca in Oftalmologia ONLUS
RECRUITING
South Korea Gyeonggi-do Seoul National University Bundang Hospital
RECRUITING
South Korea Seoul Severance Hospital
RECRUITING
South Korea Seoul Samsung Medical Center
RECRUITING
Spain Donostia-San Sebastián Hosp. Univ. Donostia
RECRUITING
Spain Madrid Hosp Univ Fund Jimenez Diaz
RECRUITING
Spain Madrid Hosp. Univ. 12 de Octubre
RECRUITING
Spain Sevilla Hosp. Virgen Macarena
RECRUITING
Switzerland Basel University Hospital Basel, Eye Clinic/Institute of Molecular and Clinical
RECRUITING
United Kingdom Cardiff University Hospital Wales
RECRUITING
United Kingdom Southampton University Hospital Southampton NHS Foundation Trust
RECRUITING
United Kingdom Sunderland Sunderland Eye Infirmary
RECRUITING
China Beijing Beijing Tongren Hospital CMU
RECRUITING
China Beijing Peking Union Medical College Hospital
RECRUITING
China Shanghai Eye and ENT Hospital of Fudan University
RECRUITING
Italy Milano Ospedale San Raffaele
RECRUITING
United States San Francisco UCSF
RECRUITING
United States Miami Bascom Palmer Eye Institute
RECRUITING
United States Atlanta Emory University
RECRUITING
United States Rochester University of Rochester Medical Center
RECRUITING
United States Portland Oregon Health And Science University
RECRUITING
Australia East Melbourne Centre for Eye Research Australia
RECRUITING
Australia Nedlands Lions Eye Institute
RECRUITING
Australia Westmead Sydney Children's Hospital
RECRUITING
Austria Vienna Medizinische Universitaet Wien
RECRUITING
Belgium Gent Ghent University Hospital
RECRUITING
Brazil Pinheiros On Oftalmologia LTDA
RECRUITING
Brazil Sao Paulo Clinica Oftalmologica Sao Lucas
RECRUITING
China Beijing Beijing Children's Hospital, Capital Medical University
RECRUITING
China Guangzhou Sun YatSen University, Zhongshan Ophthalmic Center
RECRUITING
China Shanghai Shanghai General Hospital
RECRUITING
China Shanghai Xin Hua Hospital Affiliated to Shanghai Jiao Tong University School of Medicine
RECRUITING
China Shanghai Shanghai Aier Eye Hospital
RECRUITING
Finland Helsinki Helsingin Yliopistollinen Keskussairaala
RECRUITING
France Paris Hôpital Necker-Enfants Malades
RECRUITING
Israel Tel Aviv Tel Aviv Sourasky Medical Center
RECRUITING
Italy Roma Policlinico Universitario Agostino Gemelli
RECRUITING
Japan Meguro-ku National Hospital Organization Tokyo Medical Center
RECRUITING
Spain Barcelona Hosp. Univ. de Bellvitge
RECRUITING
Spain Barcelona Hosp. Sant Joan de Deu
RECRUITING
Switzerland Lausanne Universite de Lausanne, Hopital ophtalmique Jules-Gonin
RECRUITING
United Kingdom Hull Hull University Teaching Hospitals NHS Trust
RECRUITING
United Kingdom Leeds Leeds Teaching Hospitals NHS Trust
RECRUITING
United Kingdom Liverpool Royal Liverpool University Hospital
RECRUITING
Show More
Geo Locations

33.52066, -86.80249

34.74648, -92.28959

34.05223, -118.24368

41.66113, -91.53017

29.95465, -90.07507

39.29038, -76.61219

42.27756, -83.74088

44.97997, -93.26384

41.4995, -81.69541

40.44062, -79.99589

29.70579, -95.45883

29.76328, -95.36327

29.76328, -95.36327

48.30639, 14.28611

-19.92083, -43.93778

-23.5475, -46.63611

43.70011, -79.4163

55.6666, 12.40377

43.61092, 3.87723

47.21725, -1.55336

48.85341, 2.3488

50.73438, 7.09549

32.08227, 34.81065

43.77925, 11.24626

45.46427, 9.18951

41.89193, 12.51133

37.58944, 126.76917

37.566, 126.9784

37.566, 126.9784

43.31283, -1.97499

40.4165, -3.70256

40.4165, -3.70256

37.38283, -5.97317

47.55839, 7.57327

51.48, -3.18

50.90395, -1.40428

54.90465, -1.38222

39.9075, 116.39723

39.9075, 116.39723

31.22222, 121.45806

45.46427, 9.18951

37.77493, -122.41942

25.77427, -80.19366

33.749, -84.38798

43.15478, -77.61556

45.52345, -122.67621

-37.81667, 144.9879

-31.98184, 115.8073

-33.80383, 150.98768

48.20849, 16.37208

51.05, 3.71667

-29.78333, -52.73333

-23.5475, -46.63611

39.9075, 116.39723

23.11667, 113.25

31.22222, 121.45806

31.22222, 121.45806

31.22222, 121.45806

60.16952, 24.93545

48.85341, 2.3488

32.08088, 34.78057

41.89193, 12.51133

42.12755, 143.31736

41.38879, 2.15899

41.38879, 2.15899

46.516, 6.63282

53.7446, -0.33525

53.79648, -1.54785

53.41058, -2.97794

x
50

Indicates 50+ sites in this region: click to zoom in.

10

Indicates 10+ sites in this region: click to zoom in.

5

Indicates < 10 sites in this region: click to zoom in.

Corresponds to individual site.

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