Patient Powered Research Networks (PPRN) & You

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Do you wonder how you might get involved with research in a simple way? You can always connect with one of the Patient Powered Research Networks (PPRN’s) that are actively looking for people to share their health data and research questions. PPRN’s are an offspring of the Patient Centered Outcome Research Institute (PCORI) and cover a wide range of chronic diseases and conditions.

 

I write often about the Multiple Sclerosis PPRN, iConquerMS™, and my role as the Lead Patient Representative and now also the Chair of the Governing Board.  I would love to have all of you join our PPRN and join the Big Data movement to find the answers about multiple slcerosis.

You can learn about PPRN’s, and PCORI through our portal at www.iconquerms.org.  But perhaps you have other conditions you live with and want to do more.

 

Following is the complete list of PPRNs and some of their identifying information.  I encourage you to read through the list, explore the associated links and see where you might help advance research.  At the very least, we all qualify for Health eHeart, an ambitious heart history registry that only takes a few minutes to complete and is for everyone, whether we  have heart disease or not.

 

We can only build this new way of doing research by getting the  help of many people,  and that includes you.

Be well,

Laura

 

PPRN’s of as May 1, 2015 and their information, from data I have compiled. Let me know if you spot omissions or errors so I can make the corrections.

 

ALD Connect

Network name:  ALD Connect

Website: http://www.aldconnect.org/

Project summary available at:  http://www.pcori.org/research-results/2013/ald-connect

Organization: ALD Connect, Inc.

Condition: Adrenoleukodystrophy

Population Characteristics: Pediatric and Middle Aged

 

ABOUT – American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT Network)

Network Name:   ABOUT  Network

Website: https:aboutnetwork.org

 

Project summary available at http://www.pcori.org/node/4408

Organization: University of South Florida

 

Condition: Hereditary Breast and Ovarian Cancer

Population Characteristics: Female

 

AR-PoWER

Arthritis Patient Partnership with Comparative Effectiveness Researchers (AR-PoWER)

Network name: AR-PoWER

 

Website:  in progress

Project summary at http://www.pcori.org/node/4401

 

Organization: Global Healthy Living Foundation

Project summary available at http://www.pcori.org/node/4401

 

Condition: Arthritis (rheumatoid arthritis, spondyloarthritis), musculoskeletal disorders (osteoporosis), and inflammatory conditions (psoriasis)

Population Characteristics: All

 

The CCFA Partners Patient-Powered Research Network

Network name:  CCFA PPRN

 

Project summary available at http://www.pcori.org/node/4397

Website:  https://ccfa.med.unc.edu/user/sign_up

Organization: Crohn’s and Colitis Foundation of America, Inc.

Condition: Inflammatory bowel disease (Crohn’s disease and ulcerative colitis)

Population Characteristics: All

 

CENA – Community Engaged Network for All

Network name: CENA

Website: http://www.jsrdf.org/JSLIFE

 

Project summary available at http://www.pcori.org/node/4400

Organization: Genetic Alliance, Inc.

Condition: Alström syndrome, Dyskeratosis congenital, Gaucher disease, Hepatitis, Inflammatory breast cancer, Joubert syndrome, Klinefelter syndrome and associated conditions, Metachromatic leukodystrophy, Pseudoxanthoma elasticum (PXE), Psoriasis

 

Population Characteristics: All

 

The COPD Patient-Powered Research Network

Network name: COPD PPRN

 

Project summary available at http://www.pcori.org/node/4396

Website: www.COPDPPRN.org

 

Organization: COPD Foundation, Inc.

Condition: Chronic Obstructive Pulmonary Disorder

Population Characteristics: Multiple co-morbidities

 

 

Duchenne Connect Patient-Report Registry Infrastructure Project

Network name: DuchenneConnect Patient Registry

Project summary available at http://www.pcori.org/node/4404

 

Organization: Parent Project Muscular Dystrophy

Condition: Duchenne and Becker muscular dystrophy

Population Characteristics: Pediatric

 

Health eHeart Alliance

Network name:  Health eHeart Registry

Organization: University of California San Francisco

Website: https://www.health-eheartstudy.org/

Project summary available at http://www.pcori.org/node/4407

Condition: Cardiovascular health

Population Characteristics: Multiple co-morbidities

 

ImproveCareNow: A Learning Health System for Children with Crohn’s Disease and Ulcerative Colitis

Network name: ImproveCareNow Registry

Website: https://improvecarenow.org/

Project summary available at

Organization: Cincinnati Children’s Hospital Medical Center

 

Mood Patient-Powered Research Network

Network name: MoodNetwork

Website: www.moodnetwork.org

 

Project summary available at http://www.pcori.org/node/4403

Organization: Massachusetts General Hospital (The General Hospital Corp.)

Condition: Major Depressive Disorder (MDD) and Bipolar Disorder (BP)

Population Characteristics: Multiple co-morbidities.

Seeking to enroll : individuals with mood disorders (unipolar depression and bipolar disorder)

 

Why should someone join this PPRN: To help prioritize the research questions for mood disorders, to share data to better understand mood disorders and create better interventions, and to join a community of people actively seeking answers to the diagnosis and treatment of mood disorders.

(thanks to Dan Goodman, Mood PPRN Patient Rep, for the additional information)

A Multiple Sclerosis Patient-Powered Research Network

Network name: iConquerMS™

Organization: Accelerated Cure Project for Multiple Sclerosis

Website: www.iConquerMS.org

Project summary available at  http://www.pcori.org/node/4391

 

Condition: Multiple Sclerosis, including RRMS, SPMS and  PPMS,  as well as CIS and RIS

Population Characteristics: 70% Female

Enrolling controls: Yes

Why should someone join this PPRN?  iConquerMS is a unique opportunity to  share data and research questions from  a patient centered approach to find the cause of multiple sclerosis, and identify ways to improve the quality of life of people living with MS.

 

NephCure Kidney Network for Patients with Nephrotic Syndrome

Network name: NephCure Patient Registry

Organization: Arbor Research Collaborative for Health

Website:  https://www.nephcurekidneynetwork.org/

 

Project summary available at http://www.pcori.org/node/4394

Condition: Primary Nephrotic Syndrome (Focal Segmental Glomerulosclerosis [FSGS], Minimal Change Disease [MCD], and Membranous Nephropathy [MN])

Population Characteristics: All

 

The Patients, Advocates and Rheumatology Teams Network for Research and Service (PARTNERS) Consortium

Network name: PARTNERS

 

Project summary available at http://www.pcori.org/node/4398

Organization: Duke University

Condition: Juvenile Rheumatic Disease

Population Characteristics: Pediatric

Enrolling controls:

 

 

Phelan-McDermid Syndrome Data Network

 

Organization: Phelan-McDermid Syndrome Foundation       Phelan McDermid Syndrome Foundation

Website:  https://pmsiregistry.patientcrossroads.org/

 

Project summary available at http://www.pcori.org/node/4405

Condition: Phelan-McDermid Syndrome

Population Characteristics: Pediatric

 

PI Patient Research Connection: PI-CONNECT

Network name: Pi-Connect

Organization: Immune Deficiency Foundation

http://primaryimmune.org/about-primary-immunodeficiencies/

 

Project summary available at http://www.pcori.org/node/4402

Condition: Primary Immunodeficiency Diseases

Population Characteristics: All

 

Rare Epilepsy Network (REN)

Network name: Rare Epilepsy Network Registry

Organization: Epilepsy Foundation

Website: https://ren.rti.org/

 

Project summary available at http://www.pcori.org/node/4399

Condition: Aicardi Syndrome, Lennox-Gastaut Syndrome, Phelan-McDermid Syndrome, Hypothalamic Hamartoma, Dravet Syndrome, and Tuberous Sclerosis

Population Characteristics: Pediatric

 

Sleep Apnea Patient Centered Outcomes Network (SAPCON)

Network name: MyApnea

Organization:American Sleep Apnea Association

Website: https://myapnea.org/

Project summary available at http://www.pcori.org/node/4393

Condition: Sleep Apnea

Population Characteristics: Multiple co-morbidities

 

 

The Vasculitis Patient-Powered Research Network

Network name: Vasculitis Patient-Powered Research Network

The Trustees of the University of Pennsylvania

Website: http://www.vpprn.org/

 

Project summary available at http://www.pcori.org/node/4406

Condition: Vasculitis

Population Characteristics: Adults