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College of
Health Sciences

Center for Kidney Health Research

Kidney disease affects one in every seven adults and is associated with diminished quality of life and excessive morbidity and mortality. Geisinger Center for Kidney Health Research (CKHR) is dedicated to decreasing the burden of kidney disease through a patient-oriented research program leveraging several system-level assets at Geisinger.

Areas of focus

Access to kidney transplantation

Kidney transplantation is an optimal treatment for patients with kidney failure. However, few patients with kidney failure start treatment with a kidney transplant, and individuals from Black and rural communities are least likely to receive early transplants. 

System Interventions to Achieve Early and Equitable Transplants (STEPS) Study is a research study being conducted at Duke University, Geisinger, and the University of Mississippi Medical Center to help patients with kidney disease and their families learn about kidney transplant and the steps needed to get one. This study will provide information to help understand how health systems can overcome roadblocks to improve patients’ receipt of early kidney transplants overall and among Black and rural individuals.

The STEPS intervention will identify patients who qualify for kidney transplant as early as possible, educate and support patients and their families to help them talk about overcoming roadblocks to early transplants, proactively reach out to patients to let them know they are eligible for early transplants and invite them to the transplant center, and navigate patients through the multistep transplant preparation process.

The team will randomly assign patients to receive STEPS or their usual kidney care and will compare differences in how these two treatment approaches help patients overcome critical roadblocks to receiving early kidney transplants.

STEPS is funded by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and the Patient-Centered Outcomes Research Institute. 

Clinical trials

System Interventions to Achieve Early and Equitable Transplants (STEPS) Study

 
Acute Kidney Injury (AKI) Rehab Clinic

Pioneering a new care paradigm in post-acute kidney injury (AKI) care, we aim to improve outcomes and reduce re-hospitalization in patients with high-risk AKI. 

All patients are identified in real-time using electronic health record- embedded algorithms. Active monitoring of our algorithms allows us to triage and enroll patients at historically high rates compared to prior studies. Enrolled patients start receiving AKI education before discharge and are seen in a nephrologist-led AKI clinic within 2 weeks of discharge. They are also followed by a nurse coordinator and a medical director to remove the significant barriers to care experienced by this patient population. 

This revolutionary program yields significant cost savings for the health system and analyses have indicated almost a 50% reduction in re-hospitalization and/or death. Publications about this program have appeared in journals like CJASN and Kidney360, and previously honored by the American Society of Nephrology as the best research article of the year. The program is a past recipient of the Pennsylvania Medical Society’s Health Innovations Grant. 

Our AKI researchers and data teams have also developed and published machine learning AKI prediction algorithms and are engaged in thematic research to identify barriers to care encountered by AKI patients after discharge.

Related publications

  • Hu Y, Liu K, Ho K, Riviello D, Brown J, Chang AR, Singh G, Kirchner HL. A Simpler Machine Learning Model for Acute Kidney Injury Risk Stratification in Hospitalized Patients. J Clin Med. 2022 Sep 26;11(19):5688. doi: 10.3390/jcm11195688. PMID: 36233556; PMCID: PMC9573390.
  • Singh G, Hu Y, Jacobs S, Brown J, George J, Bermudez M, Ho K, Green JA, Kirchner HL, Chang AR. Post-Discharge Mortality and Rehospitalization among Participants in a Comprehensive Acute Kidney Injury Rehabilitation Program. Kidney360. 2021 Jul 13;2(9):1424-1433. doi: 10.34067/KID.0003672021. PMID: 35373103; PMCID: PMC8786140.
  • Ly H, Ortiz-Soriano V, Liu LJ, Liu Y, Chen J, Chang AR, Gutierrez OM, Siew ED, Wald R, Silver SA, Neyra JA. Characteristics and Outcomes of Survivors of Critical Illness and Acute Kidney Injury Followed in a Pilot Acute Kidney Injury Clinic. Kidney Int Rep. 2021 Aug 27;6(12):3070-3073. doi: 10.1016/j.ekir.2021.08.017. PMID: 34901575; PMCID: PMC8640541.
Decision-making in elderly CKD patients

Older patients with advanced chronic kidney disease (CKD) often are inadequately prepared to make informed decisions about treatments including dialysis and cardiopulmonary resuscitation. Further, evidence shows that patients with advanced CKD do not commonly engage in advance care planning (ACP), may suffer from poor quality of life, and may be exposed to end-of-life care that is not concordant with their goals. 

The Video Images about Decisions for Ethical Outcomes in Kidney Disease (VIDEO-KD) trial is a multi-center randomized controlled trial to test the effectiveness of an ACP video intervention (vs. usual care) among older adults with advanced CKD. The intervention includes a CKD-related video decision aid followed by recording patient video declarations about goals of care and treatment preferences. Outcomes include ACP documentation, treatment preferences, and other patient-reported outcomes.

Related publications

  • Eneanya ND, Lakin JR, Paasche-Orlow MK, Lindvall C, Moseley ET, Henault L, Hanchate AD, Mandel EI, Wong SPY, Zupanc SN, Davis AD, El-Jawahri A, Quintiliani LM, Chang Y, Waikar SS, Bansal AD, Schell JO, Lundquist AL, Tamura MK, Yu MK, Unruh ML, Argyropoulos C, Germain MJ, Volandes A. Video Images about Decisions for Ethical Outcomes in Kidney Disease (VIDEO-KD): the study protocol for a multi-centre randomised controlled trial. BMJ Open. 2022 Apr 8;12(4):e059313. doi: 10.1136/bmjopen-2021-059313. PMID: 35396311; PMCID: PMC8996022. 

Clinical trials

Improving Medical Decision Making for Older Patients With End Stage Renal Disease (VIDEO-KD)

Early detection of kidney disease

Less than 20% of patients with kidney disease are aware of their condition. Investigators at CKHR are committed to improving the early detection and improving patient awareness of kidney disease. 

Current projects include a research study, funded by Novartis, dedicated to improving referral pathways for patients with hematuria (blood in the urine), which may be a sign for certain types of kidney disease or other urologic conditions. Another study investigates the impact of using smartphone-enabled home albuminuria (protein) testing (Healthy.io) in improving adherence to screening guidelines and diagnosing kidney disease earlier to provide opportunities to improve kidney and cardiometabolic health.

Related Publications

  • Stempniewicz N, Vassalotti JA, Cuddeback JK, Ciemins E, Storfer-Isser A, Sang Y, Matsushita K, Ballew SH, Chang AR, Levey AS, Bailey RA, Fishman J, Coresh J. Chronic Kidney Disease Testing Among Primary Care Patients With Type 2 Diabetes Across 24 U.S. Health Care Organizations. Diabetes Care. 2021 Sep;44(9):2000-2009. doi: 10.2337/dc20-2715. Epub 2021 Jul 7. PMID: 34233925; PMCID: PMC8740923. 
  • Shin JI, Chang AR, Grams ME, Coresh J, Ballew SH, Surapaneni A, Matsushita K, Bilo HJG, Carrero JJ, Chodick G, Daratha KB, Jassal SK, Nadkarni GN, Nelson RG, Nowak C, Stempniewicz N, Sumida K, Traynor JP, Woodward M, Sang Y, Gansevoort RT; CKD Prognosis Consortium. Albuminuria Testing in Hypertension and Diabetes: An Individual-Participant Data Meta-Analysis in a Global Consortium. Hypertension. 2021 Sep;78(4):1042-1052. doi: 10.1161/HYPERTENSIONAHA.121.17323. Epub 2021 Aug 9. PMID: 34365812; PMCID: PMC8429211.
  • Chang AR, Bailey-Davis L, Hetherington V, Ziegler A, Yule C, Kwiecen S, Graboski E, Melough MM, Collins C, Anderson C. Remote Dietary Counseling Using Smartphone Applications in Patients With Stages 1-3a Chronic Kidney Disease: A Mixed Methods Feasibility Study. J Ren Nutr. 2020 Jan;30(1):53-60. doi: 10.1053/j.jrn.2019.03.080. Epub 2019 May 8. PMID: 31078403; PMCID: PMC6842073.
  • Leddy J, Green JA, Yule C, Molecavage J, Coresh J, Chang AR. Improving proteinuria screening with mailed smartphone urinalysis testing in previously unscreened patients with hypertension: a randomized controlled trial. BMC Nephrol. 2019 Apr 18;20(1):132. doi: 10.1186/s12882-019-1324-z. PubMed PMID: 30999886.
  • Chang AR, Evans M, Yule C, Bohn L, Young A, Lewis M, Graboski E, Gerdy B, Ehmann W, Brady J, Lawrence L, Antunes N, Green J, Snyder S, Kirchner HL, Grams M, Perkins R. Using pharmacists to improve risk stratification and management of stage 3A chronic kidney disease: a feasibility study. BMC Nephrol. 2016 Nov 8;17(1):168. doi: 10.1186/s12882-016-0383-7. PMID: 27825313; PMCID: PMC5101703.
Genetics of kidney disease

The importance of genetics in human disease including kidney disease continues to expand as more discoveries are made. Researchers at CKHR in collaboration with investigators in the Department of Genomic Health are examining the link between genetics and kidney conditions. 

Most studies of genetic kidney conditions have focused on patients with the most severe manifestations of these diseases. As genetic testing occurs more and more in clinical care and by commercial vendors, the importance of understanding what variants in these genes mean to patients is increasingly paramount. 

CKHR investigators are leveraging Geisinger’s MyCode Community Health Initiative with electronic health record and exome sequencing to understand the full range of disease in individuals with variants in genes that cause Autosomal Dominant Polycystic Kidney Disease (ADPKD), Alport Syndrome, and other conditions such as kidney stone disease. CKHR investigators also collaborate with investigators internationally with several research groups around the world to discover new genes related to kidney function, kidney damage, and chronic kidney disease. 

Additional collaborative efforts at Geisinger include understanding barriers and facilitators of the diagnostic process of genomic conditions by nephrologists, and designing a genetic diagnosis process to improve genetic diagnosis and opportunities to deliver precision medicine. These research efforts inform clinical care in providing precision care. For example, Geisinger is recognized by the PKD Foundation as a Center of Excellence, providing high-quality, multidisciplinary care to patients in central and northeast Pennsylvania. We have also established a Fabry Registry at Geisinger to improve the health and wellbeing of patients with Fabry disease.

Fabry Disease Registry

A Fabry Registry has been established for patients with Fabry disease in collaboration with Sanofi.

The Registry serves as a first step in establishing a Fabry Center of Excellence at Geisinger aiming to provide multidisciplinary subspecialty expertise for patients with Fabry disease by integrating the MyCode Genomic Sequencing and Counseling Program, comprehensive patient assessments, enzyme replacement therapy, and encouraging clinical and genetic studies in Fabry disease and other lysosomal storage disorders.

Related publications

  • Solanki KV, Hu Y, Moore BS, Abedi V, Avula V, Mirshahi T; Regeneron Genetics Center; Strande NT, Bucaloiu ID, Chang AR. The Phenotypic Spectrum of COL4A3 Heterozygotes. medRxiv [Preprint]. 2023 Apr 24:2023.04.11.23288298. doi: 10.1101/2023.04.11.23288298. PMID: 37163122; PMCID: PMC10168410.
  • Apple B, Sartori G, Moore B, Chintam K, Singh G, Anand PM, Strande NT, Mirshahi T, Triffo W, Chang AR. Individuals heterozygous for ALG8 protein-truncating variants are at increased risk of a mild cystic kidney disease. Kidney Int. 2023 Mar;103(3):607-615. doi: 10.1016/j.kint.2022.11.025. Epub 2022 Dec 24. PMID: 36574950; PMCID: PMC10012037.
  • Chang AR, Moore BS, Luo JZ, Sartori G, Fang B, Jacobs S, Abdalla Y, Taher M, Carey DJ, Triffo WJ, Singh G, Mirshahi T. Exome Sequencing of a Clinical Population for Autosomal Dominant Polycystic Kidney Disease. JAMA. 2022 Dec 27;328(24):2412-2421. doi: 10.1001/jama.2022.22847. PMID: 36573973; PMCID: PMC9856880.
  • Lieberman KV, Chang AR, Block GA, Robinson K, Bristow SL, Morales A, Mitchell A, McCalley S, McKay J, Pollak MR, Aradhya S, Warady BA. The KIDNEYCODE Program: Diagnostic Yield and Clinical Features of Individuals with CKD. Kidney360. 2022 Mar 10;3(5):900-909. doi: 10.34067/KID.0004162021. PMID: 36128480; PMCID: PMC9438426.
  • Mirshahi UL, Bhan A, Tholen LE, Fang B, Chen G, Moore B, Cook A, Anand PM, Patel K, Haas ME, Lotta LA, Igarashi P, de Baaij JHF, Ferrè S, Hoenderop JGJ, Carey DJ, Chang AR. Framework From a Multidisciplinary Approach for Transitioning Variants of Unknown Significance From Clinical Genetic Testing in Kidney Disease to a Definitive Classification. Kidney Int Rep. 2022 Jul 7;7(9):2047-2058. doi: 10.1016/j.ekir.2022.06.014. PMID: 36090499; PMCID: PMC9459028.
  • Singh G, Gohh R, Clark D, Kalra K, Das M, Bradauskaite G, Bleyer AJ, Tanriover B, Chang AR, Anand PM. Vignette-Based Reflections to Inform Genetic Testing Policies in Living Kidney Donors. Genes (Basel). 2022 Mar 26;13(4):592. doi: 10.3390/genes13040592. PMID: 35456398; PMCID: PMC9025319.
  • Zhang Y, Zafar W, Hartzel DN, Williams MS, Tin A, Chang AR, Lee MTM. GSTM1 Copy Number Is Not Associated With Risk of Kidney Failure in a Large Cohort. Front Genet. 2019 Aug 30;10:765. doi: 10.3389/fgene.2019.00765. PMID: 31555322; PMCID: PMC6728412.
  • Besse W, Chang AR, Luo JZ, Triffo WJ, Moore BS, Gulati A, Hartzel DN, Mane S; Regeneron Genetics Center; Torres VE, Somlo S, Mirshahi T. ALG9 Mutation Carriers Develop Kidney and Liver Cysts. J Am Soc Nephrol. 2019 Nov;30(11):2091-2102. doi: 10.1681/ASN.2019030298. Epub 2019 Aug 8. PMID: 31395617; PMCID: PMC6830805.
 
Cardiovascular-kidney-metabolic (CKM) syndrome/disease

The kidneys and the heart are intrinsically linked, and chronic kidney disease (CKD) is recognized as one of the strongest risk factors for heart disease. Kidney and heart disease have many shared metabolic risk factors, such as obesity. In addition, many important cardiovascular and diabetes medications are excreted by the kidneys. Thus, investigating the interplay between kidney and cardiometabolic disease is very important for many patients. 

CKHR investigators have published high-impact papers examining cardiometabolic risk factors for kidney disease, the beneficial effects of weight loss on the kidney, and the risks and benefits of diabetes and cardiovascular medications across the range of kidney function. Current NIH-funded efforts include collaborative efforts with the CKD Prognosis Consortium to develop risk prediction models for CKD and cardiovascular outcomes, and research identifying gaps in evidence-based care in heart and kidney-saving medications. 

Our team is committed to the Learning Health System model, whereby evidence from research on patients in our health system (and elsewhere) inform our population health efforts to support continuous improvement, innovation, and equity. 

Clinical trials

FIND-CKD –This study is funded by Bayer and examines a trial treatment, finerenone, that blocks a certain hormone called aldosterone that causes injury and inflammation in the heart and kidney which is known to play a role in CKD. This clinical trial will determine if finerenone slows the rate of CKD progression compared to placebo in patients with non-diabetic CKD. This trial is ongoing, but closed to recruitment.

Related publications

  • Shin JI, Fine DM, Sang Y, Surapaneni A, Dunning SC, Inker LA, Nolin TD, Chang AR, Grams ME. Association of Rosuvastatin Use with Risk of Hematuria and Proteinuria. J Am Soc Nephrol. 2022 Sep;33(9):1767-1777. doi: 10.1681/ASN.2022020135. Epub 2022 Jul 19. PMID: 35853713; PMCID: PMC9529194.
  • Chang AR, Gummo L, Yule C, Bonaparte H, Collins C, Naylor A, Appel LJ, Juraschek SP, Bailey-Davis L. Effects of a Dietitian-Led, Telehealth Lifestyle Intervention on Blood Pressure: Results of a Randomized, Controlled Trial. J Am Heart Assoc. 2022 Oct 4;11(19):e027213. doi: 10.1161/JAHA.122.027213. Epub 2022 Sep 29. PMID: 36172955; PMCID: PMC9673709.
  • Matsushita K, Jassal SK, Sang Y, Ballew SH, Grams ME, Surapaneni A, Arnlov J, Bansal N, Bozic M, Brenner H, Brunskill NJ, Chang AR, Chinnadurai R, Cirillo M, Correa A, Ebert N, Eckardt KU, Gansevoort RT, Gutierrez O, Hadaegh F, He J, Hwang SJ, Jafar TH, Kayama T, Kovesdy CP, Landman GW, Levey AS, Lloyd-Jones DM, Major RW, Miura K, Muntner P, Nadkarni GN, Naimark DM, Nowak C, Ohkubo T, Pena MJ, Polkinghorne KR, Sabanayagam C, Sairenchi T, Schneider MP, Shalev V, Shlipak M, Solbu MD, Stempniewicz N, Tollitt J, Valdivielso JM, van der Leeuw J, Wang AY, Wen CP, Woodward M, Yamagishi K, Yatsuya H, Zhang L, Schaeffner E, Coresh J. Incorporating kidney disease measures into cardiovascular risk prediction: Development and validation in 9 million adults from 72 datasets. EClinicalMedicine. 2020 Oct 14;27:100552. doi: 10.1016/j.eclinm.2020.100552. PMID: 33150324; PMCID: PMC7599294.
  • Chang AR, Wood GC, Chu X, Surapaneni A, Grams ME. Association of Bariatric Surgery With Rates of Kidney Function Decline Using Multiple Filtration Markers. JAMA Netw Open. 2020 Sep 1;3(9):e2014670. doi: 10.1001/jamanetworkopen.2020.14670. PubMed PMID: 32886117; PubMed Central PMCID: PMC7489865.
  • Chang AR, Grams ME, Ballew SH, Bilo H, Correa A, Evans M, Gutierrez OM, Hosseinpanah F, Iseki K, Kenealy T, Klein B, Kronenberg F, Lee BJ, Li Y, Miura K, Navaneethan SD, Roderick PJ, Valdivielso JM, Visseren FLJ, Zhang L, Gansevoort RT, Hallan SI, Levey AS, Matsushita K, Shalev V, Woodward M; CKD Prognosis Consortium (CKD-PC). Adiposity and risk of decline in glomerular filtration rate: meta-analysis of individual participant data in a global consortium. BMJ. 2019 Jan 10;364:k5301. 
  • Chang AR, Surapaneni A, Kirchner HL, Young A, Kramer HJ, Carey DJ, Appel LJ, Grams ME. Metabolically Healthy Obesity and Risk of Kidney Function Decline. Obesity (Silver Spring). 2018 Apr;26(4):762-768. doi: 10.1002/oby.22134. Epub 2018 Mar 2. PubMed PMID: 29498223; PubMed Central PMCID: PMC5866209.
  • Chang AR, Chen Y, Still C, Wood GC, Kirchner HL, Lewis M, Kramer H, Hartle JE, Carey D, Appel LJ, Grams ME. Bariatric surgery is associated with improvement in kidney outcomes. Kidney Int. 2016 Jul;90(1):164-71. doi:10.1016/j.kint.2016.02.039. Epub 2016 May 12. PubMed PMID: 27181999; PubMed Central PMCID: PMC4912457.
 
Patient-centered care

Patients who develop kidney failure must choose from a variety of treatments, such as dialysis or a kidney transplant, each of which has advantages and disadvantages that may vary depending on the individual. Unfortunately, kidney failure often occurs before patients are aware of the extent of their illness, forcing them to quickly make decisions with lifelong consequences without being fully prepared or able to make informed decisions. 

PREPARE NOW study

CKHR researchers partnered with patients and a team of researchers at Duke and Johns Hopkins to measure the effectiveness of a new healthcare delivery process to improve the care of patients with advanced kidney disease. 

The PREPARE NOW study employed a new care strategy to help patients understand their risks of kidney failure, understand their treatment options, obtain needed support and choose treatments that are aligned with their personal values. In a randomized controlled trial, researchers measured the effectiveness on the new care strategy on patients’ outcomes. 

Compared with patients who received usual care, patients in the program were more likely to have their kidney treatment preferences included in their health records. There was no difference in perceived kidney self-management, choice of kidney failure treatment, number of hospital stays, referrals for kidney failure treatment preparation, unplanned dialysis, or time to develop kidney failure.

The full results summary can be found here:

Related publications

  • Green JA, Ephraim PL, Hill-Briggs FF, Browne T, Strigo TS, Hauer CL, Stametz RA, Darer JD, Patel UD, Lang-Lindsey K, Bankes BL, Bolden SA, Danielson P, Ruff S, Schmidt L, Swoboda A, Woods P, Vinson B, Littlewood D, Jackson G, Pendergast JF, St Clair Russell J, Collins K, Norfolk E, Bucaloiu ID, Kethireddy S, Collins C, Davis D, dePrisco J, Malloy D, Diamantidis CJ, Fulmer S, Martin J, Schatell D, Tangri N, Sees A, Siegrist C, Breed J Jr, Medley A, Graboski E, Billet J, Hackenberg M, Singer D, Stewart S, Alkon A, Bhavsar NA, Lewis-Boyer L, Martz C, Yule C, Greer RC, Saunders M, Cameron B, Boulware LE. Putting patients at the center of kidney care transitions: PREPARE NOW, a cluster randomized controlled trial. Contemp Clin Trials. 2018 Oct;73:98-110. doi: 10.1016/j.cct.2018.09.004. Epub 2018 Sep 12. PMID: 30218818; PMCID: PMC6679594.
  • Green JA, Boulware LE. Patient Education and Support During CKD Transitions: When the Possible Becomes Probable. Adv Chronic Kidney Dis. 2016 Jul;23(4):231-9. doi: 10.1053/j.ackd.2016.04.004. PMID: 27324676.
  • Browne T, Jones S, Cabacungan AN, Lang-Lindsey K, Schmidt L, Jackson G, Schatell D, Damron KC, Ephraim PL, Hill-Briggs F, Bolden S, Swoboda A, Ruff S, Danielson P, Littlewood D, Singer D, Stewart S, Vinson B, Clynes D, Green JA, Strigo TS, Boulware LE. The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study. J Gen Intern Med. 2022 Apr;37(Suppl 1):64-72. doi: 10.1007/s11606-021-07077-w. Epub 2022 Mar 29. PMID: 35349019; PMCID: PMC8960674.
  • Green JA, Ephraim PL, Hill-Briggs F, Browne T, Strigo TS, Hauer CL, Yule C, Stametz RA, Littlewood D, Pendergast JF, Peskoe S, Clair Russell JS, Norfolk E, Bucaloiu ID, Kethireddy S, Davis D, dePrisco J, Malloy D, Fulmer S, Martin J, Schatell D, Tangri N, Sees A, Siegrist C, Breed J Jr, Billet J, Hackenberg M, Bhavsar NA, Boulware LE. Integrated Digital Health System Tools to Support Decision Making and Treatment Preparation in CKD: The PREPARE NOW Study. Kidney Med. 2021 May 24;3(4):565-575.e1. doi: 10.1016/j.xkme.2021.03.009. PMID: 34401724; PMCID: PMC8350843.
  • Barrett TM, Green JA, Greer RC, Ephraim PL, Peskoe S, Pendergast JF, Hauer CL, Strigo TS, Norfolk E, Bucaloiu ID, Diamantidis CJ, Hill-Briggs F, Browne T, Jackson GL, Boulware LE; PREPARE NOW study investigators. Preferences for and Experiences of Shared and Informed Decision Making Among Patients Choosing Kidney Replacement Therapies in Nephrology Care. Kidney Med. 2021 Jul 30;3(6):905-915.e1. doi: 10.1016/j.xkme.2021.05.011. PMID: 34939000; PMCID: PMC8664702.
  • Barrett TM, Green JA, Greer RC, Ephraim PL, Peskoe S, Pendergast JF, Hauer CL, Strigo TS, Norfolk E, Bucaloiu ID, Diamantidis CJ, Hill-Briggs FF, Browne T, Jackson GL, Boulware LE; PREPARE NOW study investigators. Advanced CKD Care and Decision Making: Which Health Care Professionals Do Patients Rely on for CKD Treatment and Advice? Kidney Med. 2020 Jun 15;2(5):532-542.e1. doi: 10.1016/j.xkme.2020.05.008. PMID: 33089136; PMCID: PMC7568072.

Clinical trials

Putting Patients at the Center of Kidney Care Transitions (PREPARE NOW)

 

Our team

CKHR researchers are engaged in projects with other health services researchers, epidemiologists, social scientists, dietitians, biostatisticians, informaticists, health economists and geneticists at Geisinger's research departments and centers. They also collaborate extensively with researchers at other institutions. 

Investigators

Data analysts

  • Thomas Jones, MS

Research support staff

  • Lauren Gummo, research project manager II
  • Megan Oliveri, research project coordinator 
  • Amy Wagner, clinical research coordinator II


Kidney Patient Advisory Council (KPAC)

The KPAC was formed by the Geisinger Center for Kidney Health Research in June 2016, as an initiative to enhance partnership and collaboration between patients and kidney health researchers and clinicians. The advisory council consists of 12 patients with kidney conditions. The goal of the advisory council is to get feedback about existing and future research CKHR projects, to help incorporate patients as partners in clinical research. The advisory council meets three times a year, and often topics discussed are initiated by patient input.

CKHR research resources

Patient-oriented research to improve quality of care

CKHR focuses its research efforts on objectives and outcomes important to our patients. Patient-reported data collection is being directly integrated with clinical care in order to enhance and inform comparative effectiveness studies designed to improve quality of life and decrease complications of kidney disease. The structure of CKHR is designed to enhance its capabilities as a micro-Learning Healthcare System, defined by the Institute of Medicine as "…one in which progress in science, informatics and care culture align to generate new knowledge as an ongoing, natural by-product of the care experience, and seamlessly refine and deliver best practices for continuous improvement in health and healthcare." The CKHR aims to seamlessly integrate patient-reported information with clinical data, delivering actionable knowledge and improving clinical care.

Multi-dimensional research resources

Complementing the patient-reported data collection in the clinic are several large, Geisinger-wide resources. These include a comprehensive, enterprise-level data warehouse (electronic health record data since 1996), claims data through Geisinger Health Plan and genetic data, both whole exome sequencing and whole genome array genotyping, with biobanked blood (MyCode established in 2007). More than 180,000 have been consented for MyCode and have bio-banked blood samples.

Capacity for longitudinal study

Kidney disease and its complications typically require many years to develop and progress. The CKHR effort benefits from Geisinger's low, one percent annual out-migration rate. The CKHR sees patients from across the region, covering extensive portions of central and northeast Pennsylvania and northern Maryland (2.6 million people in 44 counties). Together, this degree of stability and longitudinal follow-up allows for robust investigations into disease development, progression and outcomes.

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